Jenelle's Journey

Wheelchair Repair

2012-02-07T16:09:00.000-08:00

Last Thursday, Jenelle's "brand new" wheelchair broke. It's not as bad as it sounds, but she is unable to use it until it gets fixed... thank goodness we still have her old one. OK, let's see who knows what an "abductor" is? Anyone? Well, and abductor is the little strap that is the "fifth point" of a 5 point harness (i.e. between the crotch.)

So, we're talking the strap that keeps Jenelle from sliding out of her seat belt in her chair came apart. Yes, somewhat minor, but important if you know our Jenelle. In all honesty, it didn't look like it was sewn in all that well when I got it, so it didn't surprise me.

Yesterday morning, I met with a repair guy at National Seating and Mobility. He was shocked. In all his years working with Convaid (the makers of Jenelle's wheelchair), he has never had to process a warranty repair. That says a lot for the quality of Convaid; an honestly, her last chair held up longer than we ever imagined, and it was a Convaid too! He took photos, and made a report and spoke to Convaid. It may take a few weeks, but they are going to replace the seat. Luckily, Convaid is headquartered here in Southern California, so we're hoping it won't take too long!

Her bus driver suggested taking it to a shoe repair, because really all it needs is for the abductor strap to be "re-sewn" into her seat. Not a bad suggestion, but of course, that would void the warranty. We'll just stick with Convaid.

Keep up the positive thoughts that we get a repair soon!

Almost made it!

2012-01-30T13:40:00.000-08:00

One post per week per my New Year's Resolution. I consider weeks to start Sunday, end Saturday. Well, I almost made it, but I think the "two posts in one week" should grant me some leeway. So, I missed it by two days, we all have faults! ;)

Jenelle had her first seizure of the year on January 14, and another seizure last Tuesday, the 24th. That seizure happened at the end of the school day in her class room. A grand mal lasting 2 minutes, 40 seconds. No need for Diastat, and she slept most of the evening. Hoping this doesn't start a trend.

Jenelle has a new one on one aide at her YMCA after-school program. Last Friday, her former one on one aide came to visit and she was just ecstatic to see her. I love it when Jenelle shows familiarity with people. On Saturday, she and I attended her "year end" party for the Tustin Cobra Challenger Cheer girls. She was just thrilled to see the girls again, and it was fun to watch them do their hair, do their nails and dance to fun music. The cheer leading was such a fantastic experience, and we can't wait to do it again next year!

I'm doing well so far on my new diet to help me lower the triglycerides and lose some weight. The first week was pretty tough; I had headaches I think from sugar withdrawals. However, in that first week, I also lost 3.2 pounds! The second week was much better. The headaches were gone, and I felt like I was fuller at meals, and had more energy. Isn't is amazing that what we eat can affect us so much. The second week I gained back a few ounces, and added some more exercises. Starting into my third week now and I am maintaining a total loss of 2.3 pounds. Pretty good so far, even though I cheated a bit this weekend and ate some candy from the pinata at a birthday party this weekend. :(

That is all for now - we are getting pretty busy with baseball tournaments the next three weeks, and gearing up for Little League. It's beginning to look a lot like Spring! Thanks for continued thoughts and prayers. I'll keep you posted.

Who decides the meaning of "Quality of Life?"

2012-01-18T13:46:00.000-08:00

A few days ago, I noticed on Facebook that friends were sharing a blog post about a child with mental and physical disabilities who was being denied a life-saving kidney transplant. Many were "out-raged" because on the surface it reads that a child was denied a transplant solely because she is "mentally retarded". I was busy at the time I saw the post, and didn't bother to read about it beause I thought to myself, "there is always more to the story."

At lunch today I noticed the same story had gained national attention, and was being reported on by ABC News. I read the article and remained unimpressed - there has to be more to the story. So I went to the Mother's blog, and read with teary eyes their story. And when I got to the end of it, I felt there had to be more. I looked briefly for some history on the child, perhaps a personal blog or website where the Mother was disclosing health information, but found nothing. All we are left with is her story of a horrific experience, and medical information and statistics on the child's diagnosis. In her story, the mother eludes to "Hepatits C", and "HIV"; but there is no discussion as to why those words are relavant to the hospital's decision in this matter.

Now, I would be the very first person to stand up and scream and shout that NO ONE - EVER, EVER, EVER, no one should EVER be discriminated against or denied medical treatment because they are "mentally retarded!" Just two days ago, I posted my hope that one day Jenelle be judged on the content of her character, and not by her disability. And I do personally believe that the Special Needs community (which is very vast and inclusive of many different types of disabilities) is probably still one of the most discriminated against communities in the world. Yet, even though I agree strongly with all of that - I find myself feeling sorry for this particular family.

Their daughter is only 3 years old, so this "special needs" way of life is still new to them. They can't possibly know, or understand what the doctors are warning against because they are too emotionally involved. The Mother even quotes the Social Worker and the Doctor's warnings of the dangerous side effects to a normal child, let alone a child with her disabilities. And the many medications she will need along with the long term care and attention. They are trying to make the family understand "quality of life," and all the Mother hears and knows is that her child is "developmentally delayed" and thus entitled to her right to live.

I'm not saying this Mother is wrong, but as with anything, experience tends to make me somewhat jaded. Each Special Needs Child is different, and wonderful, and complicated in so many ways. Each brings joy to the lives of their Mother and Father - there is no questioning that. But just because we have the science and ability to prolong the enivetable for our Special Needs Children, does it mean we should?

It goes back to the definition of "quality of life", and who decides the meaning of it. Yes, I realize I've just opened a big ole can of worms. That I'm the minority. In fact, I realzie I'm being very matter of fact about as decision that is as unique as each indiviual on the planet. However, the issue of "quality of life" has become very personal to me in recent years. I think of Jenelle's quality of life, Brett's quality of life, Jack's quality of life, MY quality of life, my Parents' quality of life, my Niece's quality of life, and it goes on...and yet there are so many different interpretations of the meaning.

So who decides? Who determines "quality of life?" I honestly don't know the answer. It changes with each possibility, and each circumstance, and for each individual person. I do hope that when I have to make that choice for myself or my family that the choice is easy for me. But we can't all be that lucky.

Back to the "discrimination" issue; is this child being discriminated against? I don't think so, because there is always more to the story. Is it sad? Yes. Do I feel horribly for the family? Absolutely. Are the doctors right on this one? Possibly. Again, there is always more to the story.

Jinx...

2012-01-16T11:09:00.000-08:00

Jenelle had her first seizure of the year on Saturday night lasting a little under a minute. Oh well, not a bad run for the first 14 days of the year!

All about Mommy!

2012-01-13T11:39:00.000-08:00

Second week into the new year, and a second update! I'm on a roll!

First, a report on our little girl:

I type this very, very hesitantly... and am knocking on all wood products I can find ... but I'm pleased to say that Jenelle has not had a seizure since Christmas morning LAST YEAR! Hopefully this is the year we can officially say Jenelle's new year's resolution is to quit having seizures. We can only hope!

Now, it's all about Mommy! I have a few things to report and had a follow up yesterday at UCLA. The good news, as always, I'm still cancer free! Now, the not so fun news... at least not so fun for me.

At the end of December, I saw my general doctor. Because I've been off chemo since August, it was a good time to re-do some routine labs to check my thyroid function, cholesterol levels, etc. We had done this back in June, but because of the chemo drugs, the numbers were quite skewed. So, during the week after Christmas, I had some fasting blood work done and the results were not so fun; apparently my triglycerides are very, very high. My general doctor told me to lay off the carbs and exercise and we'd re-test in 3 months. I took the labs to UCLA yesterday, and they suggested I start medication right away.

If you've known me since at least high school, you will also know that I've never, ever had to diet in my life. I've always had a very high metabolism, and I've always been very thin. Oh yeah, and the exercise part... well I don't get much exercise aside from taking the stairs in the parking garage at work.

My Father has Type Two Diabetes, so I've been worried for a while that I might follow that path. It doesn't help that I love carbs and sugary sweets. However, since my cancer, I have steadily gained weight. Some survivors tell me this is the little know secret they don't tell you about chemo and cancer - that ultimately you gain weight. However, everything I've done hasn't been helping, but I'm tired of see the number on the scale that I saw when I was pregnant with Jack! The signs are all there.

Getting old totally sucks! So does going through cancer.

However, in the last 10 years, I've gained a lot of perspective about taking medications. If your child has seizures - take medication. If your child has ADHD - take medication when necessary (i.e. during school.) If you have cancer - definitely take the medication. If you think you are getting sick - hold off on medication until it's an infection - then take the medication. With all my body has been through and all that I've survived, why just agree to simply "take a pill" when I could try to make a decent effort to change my habits? I really sort of owe it to myself, and my body since I do have this second chance at life thing going for me.

I did a lot of reading and Internet research, and learned that my diet will drastically change. Leaner meats, more fish, no sugars, limited alcohol, lots of greens, whole grains and no carbs. Thank God we have a Trader Joe's just around the corner! I started this new diet on Wednesday, and I still get temped to cheat - especially the sugar (like Sweet Tarts and such.) But I think at the very least before surrendering to medication, I owe this to myself. It's worth a try, so wish me luck!

Thank you all for the continued thoughts, support and prayers. We'll keep you posted!

(Knock Knock Knock on wood!) ;)

A New Year Means New Resolutions and New Habits

2012-01-06T09:48:00.000-08:00

Happy New Year!

Being the "A type" personality, obsessive compulsive, superstitious type person that I am, making and trying to keep New Year's Resolutions really appeal to me. Of course, I never really end up keeping them, but sometimes making yourself a promise to change something in your life is never really a bad thing. One of my New Year's Resolutions for 2012 is to update this blog more frequently, even if there is nothing to say. My goal is at least one update a week.

Here are some of my other "resolutions" for 2012:

Attempt something new each month

Be more punctual (so far, so good, but this one will fade fast I'm sure)

Better Proof-reading of drafts (per my boss's request - this one will take for sure! ;)

Strive for healthier habits and more exercise

Not much, but just some things to strive for to better myself. As for the proof reading, that has always been difficult for me. I'd like to blame it on some sort of disability that makes it impossible for my eye to see errors, but alas the real problem is that I'm convinced that I'm perfect the first time. And sometimes I'm just so busy, I just want to get one thing off my desk so I can start another. And sometimes I just lazy.

Jack announced this morning that he has decided on a Resolution for 2012. He is going to brush his teeth every day! This has been problematic for him since the broken tooth the Saturday after Thanksgiving. Yesterday, the oral surgeon removed JD's brace holding in his broken tooth. The front tooth is dead, and will require root canal, but the other is fine, so no extraction or bridge. Great news. I told Jack that another "Resolution" he could make would be to not throw the Playstation and Wii remotes. Here's hoping he keeps both Resolutions. As for Brett simply wants to be able to say on December 31, 2012 that "This year could not have been better!" And of course, Jenelle wants "no seizures". So far, so good (knock wood!)

~~~~~

Brett jokes all the time that he should have put a trade mark on the term KCA. Cancer really sucks, and it hits so close to home for me whenever I hear about it. While we all have a good laugh in "Kicking Cancer's Ass", at times it has not been something I want to tell a young child. Sometimes I say KCB, for "Kick Cancer's Butt!", but for me, KCA is the only mantra.

In September, I learned about a 12 year old girl in my area fighting brain cancer. Reading her updates on Facebook always made me smile because I could see that she had the right attitude to beat it. Her motto - NEGU, or "Never Ever Give Up!" Jessie Rees died yesterday after her long fight to "never ever give up" fighting brain cancer. She was a joy and inspiration to so many, and before the day ended she finally met her goal of getting 50,000 Facebook fans. God Bless you Jessie, and thank you for inspiring other children fighting cancer.

~~~~~

Finally, some photos from Christmas Eve that I promised:

Update as the year comes to a close...

2011-12-30T09:23:00.001-08:00

Has it really been almost 2 months since my last update? Wow, time flies. Quite a lot has happened for Jenelle since our last update, all of it being very good.

Jenelle finally finished the wean off of Banzel just days before our follow up visit to Dr. Shields. Amazingly, Banzel must have been the culprit that increased Jenelle's seizures because as we weaned, her seizures were better. Jenelle went from having a tonic clonic (grand mal) every 3 days or sooner, to one seizure every two weeks. It was an amazing improvement, and I'm grateful to have her off that medication.

Jenelle and I did a marathon visit to UCLA on November 21st, where she had a follow up with Dr. Shields, and I had a follow up with Dr. Territo. We saw Dr. Shields first without any wait - in fact, we got into our exam room 10 minute early! He was very pleased to see her more alert (remember last time she had a seizure on the way to UCLA and pretty much slept the entire appointment.) He wants to keep her medications the same for the next few months since the Banzel wean took so long. The new drug he wanted us to try is to finally be approved by the FDA in the first part of the new year, so we'll discuss it again at her follow up in February or March. He did increase her existing meds to adjust to her weight increase - Jenelle is now a solid 56 pounds!

From our appointment in pediatric neurology, Jenelle and I went to oncology to check in for my blood draw and appointment with Dr. Territo. While they took me right away for my blood draw, we were not so lucky waiting for Dr. Territo for two and a half hours. Jenelle was a trooper, and Dr. Territo appreciated our patience. All of the nurses love Jenelle and she and I strolled the halls to visit everyone.

As for my update, I'm feeling good since finishing chemo in August. I definitely feel less tired, and am ready to take on more. Unfortunately, I've been battling the sore throat, sinus infection that has made its rounds and it feels like one step forward, two steps back. My blood work showed that my immune system was rebounding, but of course with the sinus illness, my white count was elevated. Everything else was pretty close to normal. Dr. Territo wants me to stay on limited work until at least the end of the year. It's difficult to tell if I'm getting sick because of my weakened immune system from the chemo, or if I'm just getting sick. She agreed it would be good to start pushing myself more and possibly adding hours to my work day, but to listen to my body and be extra cautious. I've started to try to go back to work on Friday mornings, and of course we've been pretty busy having two bench trials in December. I see improvement, and appreciate the advice to take it easy.

Back to Jenelle, after our follow up with Dr. Shields, Jenelle went almost one month without a grand mal! That is part of the reason I hadn't updated - I knew the second I bragged about the improvement, she would have a seizure. All went well until one evening in early December when Jenelle had 3 grand mals over 4 minutes within less than 3 hours. After the third seizure, I simply gave her Diastat even though she wasn't seizing. I didn't want to fight a cluster of grand mals, and the Diastat seemed to do the trick. She perked up just after the dose to let me know she was OK, and then slept the rest of the evening. Since completing the Banzel wean, the seizures have been notably less, but we've had days where she has had quite a few one on top of the other. In all honesty, I think she's having them every two weeks or so, the last being at 6AM on Christmas Morning! Poor Jenelle slept all morning through the excitement of toys and opening presents. Santa was very good to her, and she loves all her new toys.

And as if that wasn't enough keeping on top of my cold and Jenelle's seizures - Jack added himself to the injured list. The Saturday after Thanksgiving, Jack was playing football in the front yard with some friends. During one tackle play, a friend's knee went into Jack's mouth and broke his two front adult teeth at the root, as well as a hair line fracture to the maxilla palliate. With all the times I've watched Jenelle be poked and prodded in the ER, it was not so easy watching two dental students shove Jack's teeth back into his swollen gums, and apply a brace to keep them steady. It was a very severe trauma, but the oral surgeon thinks we might be lucky to simply walk away with root canal for both teeth. Right now, Jack is on a liquid, soft food diet and under strict orders to not chew or move those front teeth. He goes back to the oral surgeon on the 3rd to see if the teeth have died. If so, then all four front teeth will be removed and he will have a bridge. Amazing to think root canal is the best possible outcome in this scenario!

Finally, I want to share that on Halloween my Dad called to tell me he had been diagnosed with Multiple Myleoma. Mom and Dad are still in Visalia, and his oncologist along with 5 other doctors are there as well. Dad wasn't sure the information was accurate, and was concerned because there were no treatment options. Dad just turned 83, and from my own cancer experience, I can understand why there are no options at his age. Immediately, I got his recent labs and called Dr. Territo for a second opinion. Her nurse Karolina reviewed his labs and set up an appointment with Dr. Territo as quickly as possible. Dad has been having a lot of pain with neuropothy in his feet (which is a symptom of myeloma), and has been unable to make long drives. He has also lost 30 pounds, and is quite fatigued. My sister Norma drove down from San Francisco to drive Mom and Dad down to UCLA where I was able to meet them for Dad's appointment with Dr. Territo. As expected, Dr. Territo was wonderful and we got some encouraging news; Dr. Territo thinks that Dad has something called MGUS, which is "pre-myeloma", and not myeloma just yet. She agreed there was not much to be concerned with right now, but his other symptoms were a concern. She wants her own tests and lab work, and will be following Dad very closely. Once again, I feel so blessed to have UCLA so close to home.

We had a wonderful Christmas and we've been spending lots of time together playing games, reading and watching football. Jack is going to have a New Year's eve party for his 11th birthday, and we are slowly ending the year on a rested note. I will post photos separately so as to give you time to catch up on this long update. Perhaps my New Year's resolution should be a goal to update more - the good or the bad, just to let you know we are OK. As always, we are thankful for your prayers and support. Blessings to you all in the coming new year!

November is National Epilepsy Awareness Month!

2011-11-02T13:09:00.000-07:00

The best way to increase awareness for Epilepsy is by sharing our personal experiences with seizures. This blog has been my ongoing therapy now for over 9 years. I am reminded each and every day that by sharing this experience, I am helping others. Thank you to readers Renee and Ashlyn for saying "Hello" to Jenelle and I at CHOC yesterday. You made my day!

Two weeks ago, I walked in the Children's Hospital of Orange County "Walk in the Park" at Disneyland (CHOC Walk) with many beautiful collegiates from Tri Delta sorority at Chapman University. I had planned to take Jenelle with me, but alas, the seizure monster woke her in the middle of the night with a nasty long seizure, and I didn't have the heart to put her through a 5 AM wake up call.

During the walk, I met the mother of one of the girls from Chapman. She knew about Jenelle, and as we were walking and talking, she asked me if the CHOC walk was emotional for me. Honestly, it was very emotional the first time we walked, but I've long passed the stage of grief for Jenelle's condition. In fact, that crisis seems like forever ago and I barely remember the stinging anniversaries anymore. Instead, I celebrate the joy I see when Jenelle achieves new ground and reaches new milestones. Just as I celebrate the accomplishments of Jack, our "normal" child. Our life doesn't even feel like a "new normal" anymore because it is simply normal.

A family member mentioned on Jenelle's birthday recently that she was one year away from doubling her life expectancy. And that is an amazing accomplishment in itself. Yet still, we are fighting seizures, and looking for that next new medication, and hoping that we can keep her seizures under control so she can continue to thrive and learn new things.

You should expect this by now; each and every November I will remind you that it is National Epilepsy Awareness month. I will ask you to wear purple, the color for epilepsy, and for you to educate yourself about seizure types, seizure first aid, and ways that you can help out our epilepsy community. But the most important request I will make is that you talk about epilepsy! Help us spread the word so we can extinguish stigma and better educate our communities on how to help those affected by epilepsy.

Greg Grunberg is an actor with a child who suffers from epilepsy. He has graciously taken his family story to the next level, and created a website charity called Talk About It to help educate the public about Epilepsy. It also helps that he has pulled in his celebrity friends to deliver the message on the Talk About It website. Check it out - it has some fantastic videos. Thank you Greg for all you've done to advocate for our kids!

Below is a video of an interview he gave a few years ago in Washington, before the Epilepsy Foundation National Epilepsy Walk. Besides giving you a glimpse of how epilepsy has affected his son, he really points out the important things like getting to the right doctors, finding the right treatment and being open about the condition. Enjoy!

Standardized Testing and Kids with Special Needs:

2011-10-26T10:33:00.000-07:00

Happy Birthday Jenelle!

2011-10-24T12:47:00.000-07:00

Our new 9 year old! My has she grown! Here is Jenelle after her Challenger Cheer Competition on Sunday.

Entering New Territory

2011-10-07T09:23:00.000-07:00

For most of the last 9 years, our lives have been lived in "crisis" mode. And any therapist will agree, after the crisis is over, that is when the real fear and potential depression can set in. Our family is now entering new territory; one filled with some stability for Jenelle, and no more chemo for me.

Let's begin with Jenelle. We are almost completely off Banzel, and with that we are seeing some stability again with her seizures. The definition of that stability being a grand mal once every week or more, instead of almost every 3 days. She has done really well with the transition to her new school. In the beginning, she was very lethargic because of the new routine. Typical Jenelle always found ways to test her new teachers. For all that she does not say in words, I can read her like a book, and I know when she lets her care givers do the work for her.

We are in the process of working on her IEP which started a few weeks ago. Her IEP this year is a tri-annual IEP, meaning she goes through thorough evaluations again. This is perfect timing in that her new program will get to fully evaluate her abilities, and adjust her goals accordingly. Her class is wonderful and really strives on being an inclusive, typical class with the rest of the school as opposed to a separate program altogether. This means she wears uniforms to school, and participates in all school functions, like fundraising, PTO programs and Assemblies. She's growing up, and adjusting well to the difference from her old school.

I couldn't be more pleased with the YMCA Inclusion program that has taken over for her after school care. Jenelle has a one on one aide, funded by Regional Center, and seems to fit in well with the rest of the group of kids her age. We've been very fortunate in that her aide is the same person each day - not something I expected. Jennifer, her Y Aide has a college degree, and interest in learning more about special needs kids and the psychology of their behavior. She is always asking the right questions, and has even picked up on things I miss with Jenelle. The little girls in after school care just love Jenelle, and love to help her any way they can. When I pick her up at the end of the day, we leave sometimes with a chorus of "Goodbye Jenelle" from her new friends. We miss Valerie, but it was a perfect transition for Jenelle, and she seems to enjoy being with kids her age.

Jenelle is cheering for the Pop Warner Challenger Cheer team. The team is absolutely adorable, and Jenelle really seems to get exctied to put on her uniform and jump with her new friends. I promise, photos to come! We are still waiting to hear about approval for the VNS, and we should be getting a call for her new wheelchair/stroller any day. Our next trip to UCLA is in November.

I had a follow up at UCLA at the end of August and because I had been on my maintenance chemo medication for two full years, with a recent ATRA round, I was officially "DONE" with chemo. My labs that day indicated that my white count was a little low, but no reason to postpone. As for returning to full time work, that is going to take a bit more time. My doctor suggested giving myself at least until the end of the year to determine if I'm back to normal and would not think of releasing me yet. I'm thankful for the rest, and have needed it at times. Some of the side effects from Methotrexate and Mercaptapurine lingered for a bit, but seem to now have subsided. I do notice that it's is easier to wake up in the mornings without that drugged feeling, especially on Fridays which was always my day after Methotrexate. I'm still tired, but that could be just being a Mom.

With the start of school came a bout with the stomach flu and a sinus infection for both me and Brett. Of course, once I supposedly have a non-suppressed immune system, I get sick! The doctor put me on an antibiotic, and said my immune system will still take time to rebound. I had a bit of a scare the other day when I got the letter granting an authorization for my next oncology follow up. The letter said it approved a bone marrow biopsy. A little un-nerved at seeing those words again, I quickly called UCLA. The blood test for my cancer usually takes two weeks or more for results, and this was perfect timing for those results to indicate anything. Thankfully to my relief, UCLA will routinely request a bone marrow biopsy from now on for approval should they feel the need to do one if I present with cancer symptoms - not because of a recent test. They prefer having it approved if needed, rather than deciding I need one and making me wait for authorization. My next follow up with UCLA is in November, same day as Jenelle's visit to Dr. Shields.

In December I will be three years cancer free, and in two more years, I'll be cured. We begin new territory in this family where there is nothing much to worry about. Of course, it will always be in the back of my mind - the "what if" it returns; but that is to be expected.

There is a unique bond with cancer survivors; we all have been given the opportunity to respect and be grateful for each day we are given. I really felt connected to Steve Jobs passing this week, especially in his words at that Stanford commencement. Live each day as if it were your last, and don't live someone else's life. It really is just as simple as that, and I am so thankful to have to opportunity to live those words with true meaning.

Jenelle's Cheer!

2011-08-31T23:35:00.000-07:00

Some photos of summer

2011-08-23T23:16:00.000-07:00

Summer began with Jack's Little League Team, the AAA Cardinals, winning District 30 Tournament of champions! We shared a special moment with Grandpa as he got to hand out the banner to Brett, JD and their team.

A few days later, Jack had the best moment of his life: He threw out the first pitch at the Angels game. We gave him the brick below as a special gift to remember the day. The brick will be laid in front of Angels Stadium as a part of their Brick Project for charity. It was an extra special day as cousin Trevor was honorary bat boy as well.

Shortly after 4th of July, Jack and I took a solo road trip to see Nana and Poppa George, as well as Aunt Onie, Aunt Norma and cousins Matt and Eric. JD enjoyed swimming with his older cousins, and going to Poppa George's concert in the park in Kingsburg.

A few days later, Jack went to his first ever sleep away camp. Here he is at Forest Home with his friends Garret and Grant. They had a blast.

Jenelle is enjoying her new summer camp as well, including their field trip to Knotts Berry Farm.

In late July, District 30 was host to a Little League Travel Ball team from Victoria, Australia. Our travel team from Tustin Eastern got to play the Kangaroos in a friendship game.

Here is a recent photo of Jenelle, taken by Aunt Debbie. She is such a young lady now, as opposed to a baby girl. Her beauty amazes me.

And Brett and I finally got to see U2 in concert at Anaheim Stadium. Brett got me the tickets two years ago, but the concert had been postponed due to Bono's (the lead singer) back injury. The concert was amazing.

One last Baseball photo... JD pitching in a travel ball tournament.

Summer has flown by, and I have more photos to share when I get a chance.

Summer is Flying By!

2011-08-10T21:46:00.000-07:00

Well geez, it's been exactly one month since my last update. My apologies! We've had a pretty fantastic summer so far, and we've been very busy as well. Jack's travel ball team, the Tustin Rampage, played in a couple of tournaments in the month of July, including the USSSA World Series in West Covina - they came in 6th in the first round (out of 23 teams), but did not advance in the second. The Rampage also played in a Friendship game for District 30 Little League, and had the unique opportunity to play a travel ball team from Victoria Australia! It was a blast, and I had fun keeping score with two Aussies doing the announcing! We were laughing more off the microphone than we did when we were on it! Meanwhile, while the Rampage played travel ball tournaments, 4 of our players were on the Tustin Eastern Little League 9/10 Year Old All Star Team that recently won the Division 5 Championship (the Southern California State Title!) Needless to say, there is a lot of talent at his age. I'll update more on JD's summer a little later with some great photos.

While driving back and forth to games, Jenelle started her new summer school program in which she had class from 8:00 to 11:50 each day. I was a little concerned at first because she came home with a "homework" packet the second day. Yes, actual homework with math, spelling, cut and paste and reading! I wasn't sure how to approach with her new teacher because I learned that it was the teacher's first teaching job. The idea of sending home a uniform homework packet with tasks that Jenelle clearly had no ability to accomplish was offensive at first. As Jack said, "Mom, that is college work to Jenelle!" I didn't turn in her homework, and heard nothing from her teacher in return.

Jenelle did really well at school after the first week or so. The YMCA program finally went into effect during her fourth week of summer school. Jenelle has two wonderful aides through the YMCA, and she has kept them on their toes. The second day, as I was getting in my car in Newport Beach I got a call from her aide, "Mrs. Curran? The little plastic thing in her tummy? Well, it fell out! What do we do?" Oops, Jenelle lost her mic-key button, and this was something we didn't cover! In fact, the YMCA didn't even have a spare. When I asked the aide if she knew how to replace it, she said no, so I told her to put a band aide over the stoma, and that I'd take care of it when I picked her up (and that I was on the way!) "A band aid? Is she in pain? Does it hurt her to have it out?" she asked. "No", I replied, "but if you don't put a band aid over the hole, stomach contents will start to leak out!" Ewe! I got to Jenelle's school, and 10 minutes later replaced the mic-key button at home. No problem!

Later that first week, Jenelle had a different aide who unfortunately got to experience her grand mal seizure. Like I said, Jenelle really kept them on their toes, and the YMCA has handled everything beautifully. Once school ended at the end of July, Jenelle started full day with the YMCA summer camp, and has accompanied them on two field trips! One to the Discovery Science Center in Santa Ana, and one to Knott's Berry Farm. They plan to travel to the YMCA pool next week, but I think Jenelle will sit on the deck for that trip! Her aide told me today that once they started full days, Jenelle seemed agitated and tired easily, but now is used to the routine and fits in well. She also has an entourage of 8, 9 and 10 year old girls who look forward to playing with her each day. It's wonderful to see her finally have friends her age.

And finally, in addition to Pop Warner Football season starting on August 1 for Jack, Jenelle started cheer leading for the Tustin Cobras as well, on their new Challenger Cheer Team! The team consists of 6 girls of varying ages and abilities. They really love doing cheers and Jenelle loves to do it as well. In fact, this evening I was trying to remember the moves without Jenelle (I stand behind Jenelle and move her arms for her) and as I started the cheer, Jenelle smiled and walked in front of me as if she knew it was time to practice! I was never a cheerleader, but it seems to come natural to Jenelle. She loves to jump and smiles when we rattle the spirit stick. The practices have been more of a work out for me, but that is not necessarily a bad thing as I could use some exercise.

Seizure wise, Jenelle is still having days with prolonged seizures. The Vimpat is finally up to the therapeutic dose, and we'll start the Banzel wean next week. Unfortunately, our next appointment with Dr. Shields is in November. Unless we hear about the VNS sooner. And three more weeks until school starts for both Jack and Jenelle. We'll have a big 5th grader, and a 3rd grader. Come September, we'll be back into our fall routine and looking forward to the holidays. Like I said, summer has gone by fast, but it has been filled with fun and we've enjoyed every minute. Thanks for the thoughts and prayers - pictures to come SOON - I promise! :)

The "Mother" of all updates

2011-07-10T21:34:00.001-07:00

For Mothers' Day, I bought myself three new lawn chairs for our new home. Two chairs for me and Brett, and a smaller one for Jenelle. They are an Adirondack knock off, and were on sale at Target. I love them because they fit beautifully in our yard, and having a place to sit and relax in the front is something I wish we had had at our old home. I always told Brett the only thing missing in that home was a porch, with chairs to sit in to sip some wine, read a book or watch the kids play. So when we moved, I bought the damn chairs, and our good friend put them together for me on our first day! I've used them quite a bit, and have met many new neighbors in the process (the chairs are on every lawn on our street), but lately we've been so busy, the chairs have been neglected.

That said, we're long over due for an update. I'll start with the youngest in our family and bring you up to date on Jenelle.

Jenelle has had a rough couple of months seizure wise. We had weekly grand mals and increased to every other day grand mals as we continued to wean Vimpat. We had a follow up at UCLA with Dr. Shields on June 20. At that point, I was 6 days away from completely getting Jenelle off Vimpat, and her seizures were almost out of control. It was hard to tell if the increase in seizures was due to to the wean itself (sometime kids can have increased seizures when a wean goes too quickly) or from the lack of Vimpat. I had been taking the wean extra slowly often adding weeks to a dose to get Jenelle to stabilize. With this information, Dr. Shields felt the increase in seizures was from the lack of Vimpat, and decided we needed to "wean" her back onto an increased dose. It also didn't hurt that Jenelle had had a 4 minute grand mal as I was driving 70 mph in the car pool lane on our way to UCLA. I was almost to the point of deciding to cross a double yellow when the seizing stopped. She slept in her "post-ictal" state through her entire appointment with Dr. Shields, so he was very concerned that things had not improved.

Since increasing Vimpat, her seizures have stabilized. Knock on wood she has gone a week without a grand mal. Once we have Vimpat to the therapeutic dose (100 mg twice a day), we will start weaning Jenelle off Banzel. Right now, she is on 3 Anti-Seizure Meds, and we'd like to get her back to mono-therapy. Dr. Shields is going to recommend Jenelle to their neuro-surgeon for the VNS implant, and wants to see Jenelle again in two months.

Jenelle started her new school on June 27, and she has been handling the change in routine pretty well. The school bus now picks her up at our door, but after school care has been held up a bit. The YMCA has an after-school program for special needs kids, but it would require that Jenelle have a paid one on one aide to be in the program. The YMCA has done an evaluation of Jenelle, and will try to incorporate her IEP goals into their program as well. This is exciting and wonderful news because the extended school year program with our District is much shorter than the program she had with the county. Everything is in place except for the funding, which will be done through Regional Center. Jenelle has been in school two weeks now without after school care. Silly me, expecting all the agencies to work together on time. We are still waiting on Regional Center, so Jenelle will not have after-school care again this coming week.

Now, onto Jack. Jack has had a fantastic summer so far, and it's not even the middle of July! Baseball is his life and passion right now, and we are enjoying every minute! By the way, Jack now goes by the name "JD" - it is a nick name he has had in sports (because usually there is more than one Jack on a team), but when he changed schools this year, he decided to take on the name for good. It's been hard for me to use it, but slowly I use it more. This is how my parents must have felt when my sister went from Leigh to Norma.

Jack's AAA team, the Cardinals, won an amazing Championship game against a team that beat them twice during the season. They took first place, then went on to win the District 30 Tournament of Champions while defeating other leagues in our District. It was an amazing run, and we really enjoyed the families we got to know on the team. As the regular season ended, Jack was voted onto the 9/10 Pool Play All Star Team - aka the Tustin Eastern 9/10 year old Red team. The All Star run was not as exciting as last year, and his team did as expected winning 2 and losing to our rival Tustin Western. Tustin Eastern had the unique opportunity to field two 9/10 year old Pool Play Teams this year, and the second team, the White team made it to the Championship game - only to lose to Tustin Western in an extra inning heart breaker game 10-9.

Just prior to the last week of school, Jack had the biggest thrill of his life as he was selected by his Grandfather (District Administrator for our District) to throw out the first pitch at the Angels Game on Little League Day! Our nephew, and Jack's cousin Trevor was also selected by Grandpa to be the honorary Bat Boy. It was a perk Grandpa Denny had been waiting for the last 6 years, and it was such an amazing experience for the family. Both boys were announced on the big screen, and JD's pitch was a perfect strike from the mound! Three days later, JD received an award at school for being "Fantastically Physically Fit", and two days after that, JD's team won the Tournament of Champions. It was a pretty amazing week for all of us.

Jack and I recently took a road trip just the two of us through Santa Barbara, San Luis Obispo and Visalia. Jack "video logged" most of the trip and we really enjoyed some special bonding time, even though he missed his Daddy, and I missed Daddy and Jenelle. When we got home, Jenelle gave me a huge smile and hug, and jumped up and down for what seemed an eternity. It was a good trip for all of us as it always feels like Brett and JD are doing things together, which leaves me and Jenelle. It's nice to be home and having some time off to relax was good.

Speaking of which, here is my latest update. On July 5, I finished my last ever dose of ATRA, the chemo pill form of a massive dose of Vitamin A for 15 days. This was my last ATRA round ever! This part of my chemo happened every three months for a duration of 15 days. The side effects included horrible head aches, dehydration, itchy skin, and of course, fatigue. I make an effort not to drink alcohol when on Vitamin A, and to increase my water intake. The side effects this last round were not as bad as it has been in the past, so that is good.

I had a follow up appointment on June 16 at UCLA, and my doctor informed me that my maintenance chemotherapy would be finished the next time I see her in August. My blood work was OK, but showed that my red count was low. This could mean many things, and she said they would not know more until getting my chromosome results. Of course, this had me a little nervous as sometime your counts are low because your cancer has returned (thus taking up room for healthy cells). At the very least, it would explain my increased fatigue over the summer. I did not get a follow up call, so I assume all is well with the low red count.

Brett is great and work has been busy for him. Now that Little League is over, he has been focused mostly on the Travel Ball Team he manages for JD and other 10 year olds. We had a quick tournament just before the 4th of July, and we are preparing for another one next season. The team's just became a 501c Non Profit organization and we are gearing up our fundraising to help raise funds for a trip to Cooperstown for the Travel Ball World Series in Summer 2013. Like I said, it's always about baseball in our family, and we wouldn't have it any other way! The team is the Tustin Rampage, and you can check us out at http://www.tustinrampage.com/.

That is all for now. I have some wonderful photos of late to share with you all, but wanted to get the "update" out. Hopefully in the coming weeks, I'll have more time to enjoy my new lawn chairs, and in meeting our wonderful new neighbors. Thanks again for the thoughts and prayers - as always, I'll keep you posted!

Memories of School Days

2011-06-07T12:14:00.000-07:00

I wanted to briefly share a news article and blog I found on Yahoo this morning, about a Dad who surprised his son's school bus each morning by waving good bye in a different costume each day. The article can be found here, and here is "Peg Leg Dave's" Blog.

This reminded me of my Dad, and how each day for my lunch at school, Dad would draw a cartoon on my lunch bag, or some special message. At first it was embarrassing, but then other kids at school were curious each day and wanted to see what message I had on my bag. Sometimes before Christmas Vacation, Dad would be so creative, he would write the music notes to "Hark the Herald Angels" and the words "Hark the Herald Angels Shout, ___ (insert number of days) till school is out!"

As kids get older, and as I am learning with Jack as he is now a tween, it is harder to find something to connect you. But doing little reminders like this, help keep kids grounded in family. Kids begin to realize that its OK to laugh at yourself, or your family, because laughter is healthy.

I found it very interesting that the Father in this story has a prosthetic leg. I think that those of us with special circumstances (i.e. be it a disabled child or disability of our own) often have to have a sense of humor when dealing with everyday life.

What a wonderful memory for this son, and what a wonderful relationship this family has with one another. Thank you to my Dad, for all the time and effort that went into decorating my sack lunches. I only wish I had saved them all.

Changes & Close Calls

2011-05-17T20:28:00.000-07:00

I've been remiss in updating a while, but I have a darn good reason ... we moved! I've been telling everyone that I'm too old for moving, and that moving is for young college age kids. Then I realize I sound like my Mother! ;) For the sake of our privacy, and because Jenelle's website is internationally famous, I'll simply say that we are in our new home, we love it and the kids are adjusting very well.

That said, our lives have been pretty hectic of late. So much so that we had a small scare a few weeks ago that shocked us into being reminded how fragile Jenelle can be. While busy one afternoon, Jenelle snuck out of her play area, walked through our garage filled with boxes, across our front lawn, to the open front door of our next door neighbor's home, through their living room (avoiding many glass vases and figurines), through their open sliding glass door and into the deep end of their pool. And yes, Jenelle does not know how to swim.

Thankfully, God made sure there were some guardian angels watching Jenelle that day. Our neighbor's relative from Holland was lounging by the pool with his eyes closed. He had just asked the 14 year old if he wanted to swim, and the 14 year old declined because he had homework. As he laid in the sun, he heard the splash and thought to himself that the 14 year old had changed his mind. A few seconds later, he realized that he didn't hear anyone resurface after the splash. He opened his eyes, looked into the deep end, and realized a child he didn't know was sinking to the bottom. Jenelle had instinctively held out her arms, and he was able to grab her arm and pull her out of the pool without jumping in.

After coughing up water, Jenelle did not answer when he asked if she was OK. Because he didn't know her and didn't know that she couldn't talk, he called for the 14 year old, who ran down stairs, recognized Jenelle and scooped her up and took her to Brett. Brett was very calm as he took Jenelle into his arms. He simply looked at her shivering, cold body and said, "sweetie, you know you can't swim silly!" and took her inside to change her.

Not many people can truly say that they have saved a life, but the relative from Holland saved Jenelle that day. If he hadn't been by the pool, or if he had drifted to sleep, she would be dead. And my stomach lurches when I think of what could have happened. We are very lucky, and Jenelle will be taking swim lessons this summer!

Another change that will be happening this summer is that Jenelle will be going to a new school (the special needs program within our school district, not with the County) and to a new daycare. We toured the district's severe to moderate program at Benson Elementary in late May with the District representative, our advocate Janna from Epilepsy Support Net of Orange County, Jenelle's current teacher Joy and her current principal Renee. Two years ago when the District wanted to place Jenelle in this program, Brett and I did not approve. The program was just not right for Jenelle's abilities, and the District didn't even have a teacher! Wow, we were very impressed with how much the program had improved. This school is the perfect fit for Jenelle, and we are very anxious for her to start on June 27.

Another positive for the school is that they have a YMCA after school program on site that will accept Jenelle with a one on one aide. While we love our day care provider, who has taken care of Jenelle since she was 18 months old, this will be a good move for Jenelle as she will be with children her age. Her current daycare has kids ages 5 and under, and Jenelle just towers over the rest. The school bus will now pick up Jenelle from our new home, take her to school, where she will then be transported to the Y after school where we can pick her up. I'm always a bit hesitant about how Jenelle will handle changes, but I think in time this will be a great situation for her. Thankfully we will always be in touch with her current daycare provider through the Internet and Facebook! ;0)

Jenelle is scheduled to see Dr. Shields again at UCLA in the middle of June. I assume we will re-address the issue of the VNS. Speaking of which, her seizures have been about the same. When we started weaning Vimpat, I saw a drastic increase in seizures. Remembering what we had done in the past, I increased her dose a bit to give her more time. Since taking the wean slower, she is doing well seizure wise, but still have more seizures than we'd like.

The official baseball season has come to a close, and the playoffs and Championship games are upon us. Jack's team is playing for first place on Thursday, and Jenelle's Challenger team is playing another Challenger team in the area on Saturday at Curran Field. I can't believe how quickly this year has gone.

Also this Saturday the Epilepsy Support Network of Orange County is having it's annual Epilepsy Walk (formerly the Epilepsy Freedom Walk). Although Jenelle is playing baseball at the same time as the walk, we have started a virtual team (Jenelle's Avocados) in an effort to raise money. Please make a donation if you can by following this link: http://epilepsywalkoc.kintera.org/boocurran

That is all for now. I will update again after our visit to UCLA. Thank you for continued thoughts and prayers, and remember to hug your kids a little tighter.

Two trips to UCLA and Two Updates

2011-03-14T22:08:00.000-07:00

Two weeks ago, I made the trip up to UCLA for my follow up with Dr. Territo. All is well with my numbers, and she wanted me to start another course of ATRA (Vitamin A Chemo.) The last 14 days have been exhausting as I've been taking 3 different chemo meds. Not to mention theo painful dry skin and cracked lips that go with the high dose of Vitamin A. Thankfully, tomorrow is the last day!

A few days later, I had a follow up appointment with my Opthamololgist at Hoag. I was diagnosed with Glaucoma many years ago, and before my cancer the doctor checked my pressures every six months. Since the cancer, and the chemo, she sees me ever 4 months as chemo can sometimes affect the eyes in unwanted ways. What was supposed to be a quick check of my pressures, turned into a much longer visit when I told the doctor that I was seeing small "spinners" in the visual field of my left eye. Upon further examination, I confirmed that there is a small area in the visual field of my left eye that "spins" or doesn't actually focus. When I cover the left eye to check the right vision, the same area is black. Apparently, this was concerning to the doctor. Disturbance in the visual field of this kind can often indicate problems in the brain behind the optic nerve. The doctor believes this is simply some damage from my chemotherapy, but wants an MRI, and an exam with a "retina specialist" for further tests. Not sure there is anything to worry about, but I will keep you posted. Right now, I'm just considering it as a "better safe than sorry" thing that usually happens to me in my post cancer life.

The other trip to UCLA was for Jenelle. We traveled today to UCLA for her 6 month follow up with Dr. Shields. We told Dr. Shields that Jenelle's seizures were still the same, but had decreased in duration somewhat (i.e. instead of a 4 minute grand mal, they last for 2 minutes.) Dr. Shields agrees that Banzel could be helping, but wants to get her off the Vimpat before we fully asses its value. I started the Vimpat wean tonight, and it should take 8 weeks to finish.

I asked Dr. Shields if he felt Jenelle would be a good candidate for the Vagus Nerve Stimulator (VNS). He said it was something to consider, and he will present her case to the neurosurgeon at UCLA for his opinion. We'll hear from them later if they think Jenelle would be a good candidate. As for now, we will stick with the medications and their doses, except for the Vimpat wean.

And, we received a bit of sad news today. The wonderful class with the County of Orange where Jenelle has been a student for 2 years is going to be closed June 30. This is the 4th year that the County has had to cut classes. This means Jenelle will need to be transitioned into a new severe to moderate class for special needs students; and most likely at a new school. I spoke with the County Principal today, and indicated that I wanted to tour all of our options, including the County Program in Anaheim, the County Program in Irvine, and the Severe to Moderate Classes in Tustin. Two years ago, it was my belief that the Tustin program was not a good fit for Jenelle, however, their program has been in place now for 2 years, and of course, Jenelle has changed as well. I am keeping an open mind about all of the programs in our area, and hope the transition will be a smooth one.

That is all for now! Thanks for the continued prayers and positive thoughts. I'll keep you posted!

You know you've been to the ER too many times when ...

2011-02-22T23:16:00.000-08:00

... you get a message on your answering machine from your child's doctor, stating that your insurance has requested the doctor contact you to "remind" you to try to "seek help from your general practitioner, GI Specialist, and/or Neurologist during weekdays and work hours as opposed to going to the ER for non-emergencies." OH REALLY!?! I had no idea that is how it is supposed to work!

Silly me. And here, I thought that maybe, just maybe when your child's mic-key button has been out for an unknown length of time, and you had trouble inserting it yourself, so instead of puncturing your child's stomach you thought it might be best to take her to the ER, just in case she needed surgery.

And silly me. It wasn't my fault that Jenelle had a grand mal at school that lasted over 9 minutes, and they couldn't give her Diastat, so rather than risk a permanent seizure state or further brain damage, they called 911 and had her transported to the ER so she could get IV seizure medication.

And silly, silly me. When I was uncertain as to whether or not my child had swallowed a pony tail holder, and she didn't poop for 4 days and was crying inconsolably I decided she needed an x-ray and went to the ER; in case she needed surgery. Only to learn later the poor child was constipated.

Maybe if my child could talk, I wouldn't abuse the ER so much. Maybe I like the special treatment and attention I get when I taker her to the ER. Maybe I enjoy subjecting my immune compromised child as well as my post-cancer/chemotherapy immune compromised self to the endless patients lining the halls with fevers, coughs and vomit at the ER in hope of getting sicker.

Hmmmm. Wait just a minute. Let's hear that again. Oh yeah. I'm the one forcing my child to make needless trips to the ER for "non-urgent" things like seizures and a missing mic-key button. I'm the reason it takes at least 4 hours to get in and out of the ER, even when you arrive via ambulance. Certainly not the endless individuals lining the chairs and hallways with their cold germs and flu. Certainly, their medical needs are much more "urgent" than mine because we all know, only the ER has the cure for the common cold and the flu, but they just won't let those darn general practitioners in on it.

Or maybe... just maybe... Its because I actually have insurance... therefore the ER has a way in which to contact me to request I not come in so frequently for "non-urgent" matters; as opposed to all those other patients without insurance who are there because they really don't want to fork out money to a doctor when they can get health care at the ER for free.

Yeah, that's it. That's the ticket.

~~~~~~~~~~~~~

In all seriousness; there was an actual message on our answering machine last Friday from Jenelle's pediatrician, Dr. Patel - whom I love and adore with all my heart. She actually said on the machine that my insurance asked her to call, to make sure I knew not to use the ER for "non-urgent" issues that could best be handled by her, Jenelle's GI or Jenelle's Neurologist. I called her back and we both had a good laugh, but she said that Jenelle's medical group (St. Joseph's Heritage Medical Group) was really "cracking down" on people who frequent the ER. I told her, "You know me. You know I'm not going to the ER unless it wasn't absolutely necessary." She agreed, but said she was just doing her job. She had received a letter from Jenelle's medical group instructing her to call me to discuss the issue. I can totally respect that. I just hope St. Joseph/CHOC ER is reaching out to the real offenders; the patients that go to the ER because they don't have insurance or a real doctor.

Thank you for listening to my rant. Now, for your viewing pleasure, I want to share a video clip I took on Monday of Jack and Jenelle "jumping" together at the Little League field. Jenelle can jump a whole lot better than she does in this video, but it was just too cute not to share. Jack has turned into a wonderful, caring big brother and loves to give Jenelle hugs, hold her hand when we walk her places and take care of his special little sis. It just makes me happy to see the two actually starting to have a sibling relationship.

Enjoy!

Less seizures, but still fighting the seizure monster!

2011-02-08T22:12:00.001-08:00

When I haven't updated in a while, it can mean many things; Jenelle is sick, I'm sick, We're just really busy, and/or I'm just don't want to jinx anything. This time, it's the later of those choices!

Since getting to the full dose on Banzel, we've started to see some decrease in seizures for Jenelle. And by that I mean... instead of big seizures every other day/week, we're seeing more time pass between episodes of seizure clusters. Improvement? Yes, you could say that. I've been biting my tongue, and knocking on wood, and just when I want to say things are better, Jenelle has another bad seizure day. Yesterday was one of them.

Thankfully, we now have a very good action plan in place for days when Jenelle has bad seizures. A few weeks ago, the family had been planning to attend a baseball tournament for Brett and Jack's travel ball team. It was rainy and cold, but Jenelle and I never miss an opportunity to watch her brother play baseball... unless of course she has a 4 minute grand mal. After her lengthy seizures, Jenelle usually falls asleep (in a "post-ictal" seizure state) for anywhere from a half an hour to two hours. So I stayed home with Jenelle while the boys played baseball (and won the tournament) in the rain.

Yesterday, Jenelle woke us with a grand mal lasting a little more than a minute (we think) at 6:00 AM. We never really can tell how long she has been seizing when she is sleeping, but I hear the familiar vocal noises and both Brett and I sat in bed silently for a minute, before I got up to check on her. It was one of those parenting moments when you lie in bed, double check that you heard what you heard, and wait to see if your spouse will get up instead. Of course, Jenelle was post-ictal for a while after, and I went back to bed turning off my alarm instead of hitting snooze. We woke frantically with 10 minutes to get Jack out the door for school. Nice way to start a Monday! On my way to work, I called Jenelle's teacher to give her a head's up. A few hours later, she called concerned as Jenelle had a drop seizure, and was again sleeping. After a few more seizures, I decided to get Jenelle from school, because my time was better spent watching her sleep at home, instead of ending up in the ER should the seizures get worse. Jenelle had a few more at home, but by dinner time was her old self again.

Speaking of dinner and food, Jenelle had a follow up last week with Dr. Idries, her GI doctor. Since stopping formula last May, Jenelle has lost 3 pounds, and went from being in the 75th percentile to the 25th percentile for weight. Dr. Idries wants to give her 3 more months without formula, but her her weight doesn't come back, we may be back on formula. I'm not too concerned as Jenelle is very healthy. In fact, at our last visit the doctor thought Jenelle was over weight, so I'm not really sure how 3 pounds made such a difference. So, instead of water and juice, Jenelle is getting more whole milk with her meals, and hopefully gaining some of that weight back!

As for the seizure improvement, I e-mailed Dr. Shields a few weeks ago to see if we could start weaning the Vimpat, but he would rather give it more time. We see him again in March. That is all for now. The kids are getting ready for baseball as opening day is two weeks away.

Thanks for the continued prayers. I'll keep you posted!

Remembering Dr. King and taking his dream to new heights

2011-01-17T10:43:00.000-08:00

Today is Dr. Martin Luther King, Jr. day in the United States. It is exciting to know that Jack cannot fathom the idea of racism and prejudice. However, sadly, members of our community continue to fight stigma and prejudice. I believe there is a "group" of individuals in the world that are just beginning their fight for equal rights in our society. These individuals are not separated by color, sex, age or economic status. I'd like to see Dr. King's "Dream" fulfilled in this way...

"I say to you today, my friends, so even though we face the difficulties of
today and tomorrow, I still have a dream. It is a dream deeply rooted in the
American dream. I have a dream that one day this nation will rise up and
live out the true meaning of its creed:

We hold these truths to be self-evident: that all men are created equal.

I have a dream that one day on the red hills of Georgia [people living with
physical and mental disabilities and people without disabilities] will be able
to sit down together at the table of brotherhood...I have a dream that [children
with special needs] will one day live in a nation where they will not be judged
by [their disability] but by the content of their character. I have a
dream today."

I share that dream with you Dr. King. We've come so far, but we still have more to do. Will you help me make this dream a reality?

Welcome 2011!

2011-01-02T23:34:00.000-08:00

Well, if I had any grand hopes that the New Year was going to be seizure free for Jenelle, they went out the window this morning when Jenelle had another 4 minute grand mal. I've been home with Jenelle all week as she is on break without daycare, and I still honestly think we may be on the tail end of getting her meds right. Since adding Vitamin B6 and finally making it to the prescribed dose of Banzel, there has been some noticeable improvement with her absence seizures (i.e. - we are seeing less!) It is still too early to tell, and Dr. Shields said it could take at least 6 weeks at the prescribed dose of Banzel until we start seeing a significant difference. So, the seizure today while discouraging, is still acceptable in that we don't have to give up just yet. I'm encouraged that at least one seizure type seems to have improved, although I hate watching a grand mal as they are so horrific.

And, Jenelle had a trip to the ER this week, but for once it was not seizure related. As Elmo on Sesame Street says, "Everybody poops!" to which I say "except Jenelle!" Poor Miss Jenelle has been dealing with a horrible bout of constipation since before Christmas. Last Tuesday, Nicki and I took the kids to Irvine Park with a picnic lunch from Burger King. As I was feeding Jenelle a cheeseburger, she began to scream and cry. Jenelle loves her food, so this was definitely not normal. I started to think back in my mind, and realized her last significant BM was on Christmas Eve. Ironically, the day before Jenelle had swallowed what I think may have been a pony tail holder. I then started to do the math, and worried that she had an obstruction or blocked intestine. I left the boys with Nicki at Irvine Park and Grandma met us at the gate and took us to the ER.

The ER was jammed packed, and it took us 2 1/2 hours just to get to triage. When taking her vitals, I joked with the nurse and suggested we just get an x-ray while we were still waiting in the lobby. She actually agreed that it would be a good idea to speed things along. Half an hour later, we were called back for an x-ray; an hour after that we finally saw a doctor. The good news is that they could not see an obstruction, and the bad that Jenelle was full of stool. Two adult sized enemas later and she passed some stool, but not what we were hoping for. The doctor sent us home with advice to give her Miralax daily for the next 6 months. We think her medication could be making her constipation worse.

Since coming home, Jenelle has had a hard time (no pun intended) with her bowel movements. The only way she has passed stool is from the help of a glycerin suppository or an enema. I called our pediatrician two days later for advice, and he said not to worry as long as we were getting something out. He warned not to use the laxatives and enemas too frequently because she could become at risk of becoming dependant on them. Every other day was acceptable.

Other than the BM issue and today's seizures, it has been a wonderful holiday. I've been meaning to post photos, but find that when I have a few spare moments, a nap is more attractive than playing on the laptop. I'm doing well and (knock on wood) have managed to avoid illness this holiday. Even with the 6 hours in the ER for Jenelle.

Jack celebrated his 10th birthday on Saturday. We had 7 boys spend the night on New Year's Eve and celebrated his birthday for once with friends on the actual day. Last night before going to bed, Jack announced that he was now a "tween". Oh boy, here we go!

I really think 2011 is going to be a fantastic year, and I'm not just saying that because 11 is my lucky number. I think we'll finally gain back the seizure control we lost for Jenelle and my health should continue to improve as well. My only New Year's Resolution is to finish chemotherapy this year; and if all goes well, that will happen in August!

Thank you for continued thoughts and prayers. I'll post some photos soon!

New Plan for Jenelle's Increased Seizures

2010-12-13T18:28:00.001-08:00

In the last few weeks, Jenelle's seizures have gone from having a "big one" every two weeks, to having a "big one" weekly, to now having lengthy seizures every other day. She continues to have long tonic seizures that go over two minutes and often end transitioning into a grand mal. School has seen this seizure, as well as her daycare provider. Both agree, these tonic seizures are horrific to watch as every muscle in Jenelle's body contract and stiffen during the seizure. Poor thing has also been very lethargic often taking 3 or more naps a day this past weekend. I can't help but wonder if she is napping because of the new medication, or if she is napping because her little body is tired from so many seizures.

Over the weekend, I had a revelation about Jenelle that prompted me to use my secret "back line" to Dr. Shields today. Using the general line to get in touch with him can often take a few days for a return call, if you get a return call at all. I sent an e-mail to his nurses this afternoon and spoke to Dr. Shields this evening on my drive home from work. He agreed her seizures were going in the wrong direction and that we needed to be more aggressive with getting her onto Banzel. Instead of increasing it every two weeks, he wants to increase weekly to see how it goes. We'll start that increase tonight.

As for my revelation over the weekend, Dr. Shields was very intrigued. At a holiday dinner on Saturday, I was talking with a new friend who is a physical therapist and into holistic nutrition. We talked a bit about Jenelle and he asked me lots of questions about Jenelle's vitamin intake. My response was, "Well, she is not taking any supplements right now, however, we usually don't have to worry about that because she is eating so well by mouth. She used to get all of her needed vitamins from her formula." Then it hit me. We took Jenelle off formula in May, coincidentally around the same time Jenelle's seizures started to get worse. Could it possibly be a simple vitamin deficiency has been causing all this havoc with her seizures?

Like I said, Dr. Shields was intrigued with this idea and agreed it was something to consider. He gave me instructions this evening to start giving Jenelle 100mg Vitamin B6 a day; 50 mg in the morning, 50 at night. He said that Vitamin B6 seems to have the most connection in causing seizures, and if we add that and see a significant difference, we may be onto something.

So while the increase of seizures has been disappointing of late, we now have a new plan. Please keep us in your special thoughts and prayers that her seizures do not get worse. The last thing I want this holiday is a hospital stay. I will continue to keep you all posted. Thanks in advance for the thoughts and prayers!

First long trip away from home with one hiccup!

2010-12-01T00:05:00.000-08:00

When we saw Dr. Shields on the 15th, I told him we were planning an trip to Las Vegas for a baseball tournament for Jack's travel ball team (that Brett coaches) and that we were taking Jenelle. His advice? "Take lots of Diastat, and patience."

We left for Las Vegas after Thanksgiving dinner for 5 days and 4 nights, and the coldest weather imaginable. It was Jenelle's first "multiple night" trip away from her norm, other than visiting Nana and Poppa in Visalia. The drive out was great and we made it to Las Vegas in 3 and 1/2 hours. Jenelle slept the whole way, but upon our 11:30 p.m. arrival, she was awake and not very interested in sleep. The first night was tough, and in all Jenelle had about 5 to 6 hours of sleep total.

The team's first game was at 1:00 p.m. on Friday, and it was about 46 degrees. Jenelle had been a little whiny, but seemed to be adjusting to the cold all bundled up. During the first game, she was very happy and giggly, then she had a 4 minute absence seizure, where she was twitching, and non-responsive. Immediately as she came out of the seizure, she began crying and was very agitated. I had a feeling it wasn't the last one we'd see.

Once I calmed her down and got her to stop crying, I put her in her stroller. Aunti Nicki was sitting with me when Jenelle began to have a tonic seizure (where all of her muscles constrict). Her legs went stiff and her arms were out straight. Usually a tonic seizure like this for Jenelle lasts less than a minute, but as I watched the clock, this seizure went on for over two minutes. As her face became cyanotic and blue, I handed my cell phone to Nicki and pulled out the Diastat. The tonic seizure then turned into a grand mal and Jenelle started convulsing. I told Nicki to call 911, and pulled Jenelle from her chair to take her to an area where I could put her on the ground. I rolled her to her side and was about to administer Diastat when she stopped.

Our baseball friends unfortunately had seen this before, and ran to help me with blankets. When the paramedics arrived, Jenelle was not seizing, but when we told them she had had two seizures within a half an hour, they told me they had to take her to the ER. I was thankful just to get the reassurance.

We were transported by ambulance to St. Rose Hospital in Henderson. If you ever have to go to the ER in Vegas, I would highly recommend this one. As Jenelle's gurney was taken out of the ambulance, we were met by a nurse and a doctor, both asking me lots of questions. Within minutes, they had called UCLA to get a plan, and took blood and urine to rule out infection. I explained to the doctor all of Jenelle's history, and that her seizures had been out of control of late. I told him she was "due" for a big seizure, and that we had just started Banzel (ironically that Monday!) The doctor had never heard of Banzel or Vimpat, but he was familiar with Dr. Shields, though they had never met.

Once the blood work and urine came back normal, the doctor was about to let us leave, confident that I was comfortable using Diastat if needed. As he started to discharge us, Jenelle decided to have another seizure, which changed the doctor's plan a bit. They administered IV Diazapam (Valium) and let Jenelle sleep it off for an hour. Once she woke up and became alert, they let us go home... to our hotel.

The remainder of the weekend was uneventful seizure wise. Jack's team played 6 games and ended up in the top 4 out of 15 teams in the tournament, losing in the semi-final. After the ordeal with the bad seizures and trip to the ER, Jenelle couldn't have been a better Angel. She loved snuggling in bed in the early morning, and loved the free breakfast buffet at our hotel. Jack of course was excited to be with friends, playing baseball in another state!

We got home on Monday evening to avoid traffic out of Vegas. Ironically, a letter from Dr. Shields office scheduling our next appointment for March was waiting in our mailbox. I have a call into him to see if he wants to see her sooner. UCLA told our Henderson doctor that they did not think the Banzel was working yet, and that it sometimes took almost 3 months before you started to notice it working. For now, the plan is to keep things the same (medication wise) and wait to hear from Dr. Shields.

I cannot believe the holidays are here, and with the weekend after Thanksgiving spent in Las Vegas watching baseball, I feel a little behind on things like decorating and Christmas cards. Speaking of Christmas, we were watching Rudolph the Red Nosed Reindeer tonight, and I couldn't help but think of Jenelle as Rudolph. A little different than the rest, but so much to give the world.

Thank you for the continued prayers. I'll keep you posted!

The Verdict on Vimpat

2010-11-15T21:28:00.000-08:00

Jenelle had a follow up with Dr. Shields today at UCLA. The last time we saw Dr. Shields in July, he put her on a new medication called Vimpat. We had hoped it would help decrease her absence clusters. Today, I told Dr. Shields about her recent 9 minute grand mal, and the 4 minute tonic seizure she had a week ago (I didn't mention it in an update previously because it stopped without intervention.) We decided that the Vimpat is not working, and that we should move onto a new drug called Banzel.

The drug Banzel is specifically FDA approved for children with Lennox Gastaut Syndrome. Instead of waiting to wean off Vimpat, we are going to add Banzel to the drugs she is already taking (Felbatol and Vimpat.) Remember, one thing at a time, so we know what works and what doesn't. We'll see him again in 3 months, or sooner if we have a bad experience with Banzel.

That is all for now. I will keep you posted.

Novemeber is National Epilepsy Awareness Month!

2010-11-01T00:33:00.000-07:00

November 1 begins National Epilepsy Awareness Month. The color for Epilepsy Awareness is purple. Each year, I try to post information to help advocate and promote epilepsy awareness and to help educate everyone on what to do during a seizure emergency.

Recently, Jenelle had a 9 minute tonic clonic (grand mal) seizure at school. She was convulsing, foaming at the mouth and non-responsive. A grand mal seizure is not a typical seizure for Jenelle; she has had maybe 7 grand mals in her lifetime. Like an earthquake, there is no way to predict when it can happen, so the best advice is to be prepared. We have a seizure plan in place with Jenelle's school that describes certain procedures to be taken when Jenelle has cluster seizures (small seizures that come on one after another that total 15 minutes or more in a 20 minute time frame) or a prolonged tonic clonic seizure lasting more than 5 minutes.

The written plan in place involves administering Diastat to stop the seizure. Diastat is prepared dose of Valium designed to be given rectally. Jenelle has had a prescription for Diastat since she was 2 years old. Our entire family has been given instructions on how to administer Diastat. Diastat is designed for administration by a non-medical professional, and it has been approved by the FDA for such a purpose. Diastat has kept us out of the emergency room on many occasions.

During her 9 minute seizure, Jenelle did not get Diastat. Her grand mal went 4 minutes longer than it needed to. This because in California, the Board of Registered Nurses ("BNR") issued a directive in September 2009 advising school nurses statewide not to train teachers and other laypeople to administer Diastat. An excellent article from the Orange County Register in January of this year discusses the intricate complications the directive from the BRN has caused for families of children who suffer from seizures.

When the Directive came down last year, the Orange County Department of Education hired a registered nurse to be on site, or within a short distance of campus should Jenelle have a seizure emergency. We were OK with this. As it happened, Jenelle's nurse was not on site the day of her 9 minute seizures, and out for a personal medical issue. The timing just worked that way that day, and I don't hold any anger against the nurse or the school. The problem is bigger than that, and in my opinion is a direct result of the BRN's directive in September 2009. Lives are at stake, and the BRN's stance on this issue is simply a time bomb ticking.

School nurses are in fear of losing their license if a special needs teacher, or other lay person (including a paramedic) administers Diastat without their presence. These are the same individuals that used to be allowed to administer Diastat prior to the BRN's Directive. What ever happened to the law that protects Good Samaritans in an emergency? What does this mean for parents who routinely administer Diastat to children? I know that I could not stand by and watch Jenelle seize; hoping to God it isn't the seizure that takes her from us.

Senate Bill 1051, written by Senator Robert Huff of Orange County, has been introduced to the California State Legislature, and is currently in process. You can find the most recently amended version of the proposed statute here. This bill would allow lay persons to administer Diastat after proper training and instruction. If this bill fails, it would potentially risk the lives of many who suffer from epilepsy from gaining access to necessary emergency treatment.

While our state legislature takes its time in passing this urgent legislation, and the BRN continues to stand on it's directive (that is more about a union trying to saving jobs, than it is about the liability of administering Diastat by a lay person), persons with epilepsy remain vulnerable.

Any seizure that lasts longer than 5 minutes is an emergency. A seizure that lasts longer than 20 minutes can cause permanent brain damage. Seizures left untreated can lead to status epilepticus (permanent seizure state) and in rare instances, death.

What exactly is a seizure? Seizures can last from a few seconds to a few minutes. They can have many symptoms, from convulsions and loss of consciousness to some that are not always recognized as seizures by the person experiencing them or by health care professionals: blank staring, lip smacking, or jerking movements of arms and legs.

According to the Epilepsy Foundation, when the following conditions exist, immediate medical attention is necessary:

Diabetes
Brain infections
Heat exhaustion
Pregnancy
Poisoning
Hypoglycemia
High fever
Head injury

An un-complicated generalized tonic clonic (grand mal) seizure in someone who has epilepsy is not a medical emergency, even though it looks like one. It stops naturally after a few minutes without ill effects. The average person is able to continue about his business after a rest period, and may need only limited assistance, or no assistance at all, in getting home. In other circumstances, an ambulance should be called.

When to Call for an Ambulance

No Need to Call an Ambulance if medical I.D. jewelry or card says "epilepsy," and
the seizure ends in under five minutes, and consciousness returns without further incident, and there are no signs of injury, physical distress, or pregnancy.

An Ambulance Should Be Called if:

The seizure has happened in water;
There's no medical I.D., and no way of knowing whether the seizure is caused by epilepsy;
The person is pregnant, injured, or diabetic;
The seizure continues for or a second seizure starts shortly after the first has ended; and
Consciousness does not start to return after the shaking has stopped.

If the ambulance arrives after consciousness has returned, the person should be asked whether the seizure was associated with epilepsy and whether emergency room care is wanted.

So what can you do about Senate Bill 1051 and the Diastat issue? Write your representatives. Urge them to pass this necessary law. Write to the Board of Registered Nurses. Tell them how you feel they are endangering the lives of innocent children who suffer from epilepsy. Here are some links and addresses to help you:

California State Senate

California State Assembly

California Board of Registered Nursing

Board of Registered Nursing
P.O. Box 94421
Sacramento, CA 94244-2100

Please share this information with your friends and family, and remember that epilepsy awareness month is a time to speak up for those who cannot. Every moment lost to seizures, is a moment lost in development. For more information on epilepsy, please check out these sites:

Epilepsy Foundation

Talk About It

Epilepsy Support Network of Orange County

Happy Halloween -Be Safe!

2010-10-31T15:11:00.001-07:00

Follow Up at UCLA for Kelly

2010-10-30T15:24:00.000-07:00

On Thursday, I took Jenelle with me for my follow up at UCLA with Dr. Territo. Everything is good with me; my counts are strong and I'm still cancer free. Dr. Territo wants me to finish the course of ATRA (Vitamin A chemo) that I started in September, but had to suspend when I was having the headaches. I have a planned dental cleaning next Friday, so she wants me to start chemo the following Monday and take the ATRA for the next 10 days.

Prior to my appointment at UCLA, Jenelle and I stopped by my office to drop off donuts for our (new) secretary's birthday. My department has a new secretary, and her first day at the firm was the day Jenelle had a 9 minute seizure. Just as we were leaving to take her to lunch on her first day, I got the call and had to rush out. Since she had already heard so much about Jenelle, it was only fitting to have them meet, so she could see how special Jenelle is.

It was a wonderful visit for Jenelle. I realized the last time she made a visit at the firm was two years ago. At that time, I tried to walk her around the office halls, but she was easily tired. Last Thursday, Jenelle was walking everywhere, and very cute when she peeked her head over cubicle bays to say hello. We had a wonderful day together in our trip to UCLA, and it was helpful to have her for the car pool lane as well.

That is all for now. With the holidays approaching, my next follow up will be in 6 weeks. That is all for now - I'll keep you posted!

Our New 8 Year Old!

2010-10-22T23:36:00.000-07:00

Jenelle and her big brother Jack!

Is this really for me?

I'd rather eat the table instead!

Yummy Pizzookie!

Happy Birthday Jenelle!

Happy 8th Birthday Jenelle!

2010-10-22T00:00:00.000-07:00

Eight years ago today, we were blessed with the birth of our beautiful Jenelle. While her life has been challenging, we are constantly reminded that every achievement, no matter how small, deserves celebration. Thank you sweet Jenelle for making us better parents, and for showing us the important things in life.

My how you've grown! We love you!

Big seizure for Jenelle on 10/10/10

2010-10-12T22:15:00.000-07:00

Sunday night, Jenelle was acting very strange. She had a horrible bout of insomnia. She was anxious, frantic and very distracted. She didn't fall asleep until well after midnight, after I held her tightly to get her to relax. If she had been a cat, I could have sworn we were going to have an earthquake.

Well, it wasn't an earthquake, but a bad day none the less for our Jenelle. About a half an hour after speaking to Jenelle's teacher to notify her about Jenelle's bout of insomnia, her teacher called back to tell me that Jenelle was having a grand mal, that it had been over 5 minutes and that she had already called 911.

I was at work, so I notified my boss, and left immediately. In the car, her teacher called back to tell me that they were on the way to the hospital and to meet them there. She said the grand mal went 9 minutes. I asked if they had given Jenelle Diastat, her emergency seizure medication, and her teacher said no. I got to the ER just as the ambulance pulled in. When I got back to the exam room, Jenelle was lethargic and curled up in a ball, and seemed tired, as to be expected.

The County program that runs Jenelle's school has a registered nurse on staff that is there to help administer Diastat when needed. As you may have heard in the news, the Board of Registered Nurses in California have succeeded in obtaining a court ruling to back their recommendation that only a registered nurse, or medical doctor can administer Diastat. The BRN also feels that the RNs on campus are not qualified to instruct lay professionals, like school nurses (that are not RNs), health room aides and teachers, on how to administer Diastat (which is a dose of valium given rectally. The BRN recommendation also extends to EMTs and paramedics, prohibiting them from administering Diastat when needed. Sadly, the issue is a time bomb ticking. Individuals who have given Diastat in the past to stop seizures from going too long and inflicting brain damage are now prohibited from giving it. The RN who is normally scheduled to be at Jenelle's school yesterday was out sick, so Jenelle did not get her Diastat.

The County Nurse who was at another location during Jenelle's seizure arrived at the ER to pick up Jenelle's teacher, who rode with Jenelle in the ambulance. Both are wonderful care givers to Jenelle, and we completely understand why their hands were tied in this situation. I will, however, sending a strongly worded letter to the Board of Registered Nurses.

At the ER, they ran blood work and urine tests to make sure Jenelle wasn't ill. She started to have more seizures in the ER, so they started an IV and gave her a loading dose of Dilantin. During the Dilantin push, Jenelle started vomiting. It was a strange reaction as she has never vomited with Dilantin before. With the Dilantin, Jenelle fell asleep and the ER sent us home after her test results were normal. We got home around 4:30 and I gave Jenelle a shower to rinse her off. She went straight to bed and slept until 8:30.

Around 10:00 p.m., Jenelle started vomiting again. Knowing that she hadn't had her medicine or much to eat all day, I sat up with her until after midnight trying to get fluids into her g-tube. Jenelle kept dry heaving, but eventually fell asleep, so we avoided a return trip to the ER. Today, Jenelle has been holding down fluids, meds and food. We were very fortunate that Jenelle's seizure stopped on its own after 9 minutes. She started acting more like herself this evening, and even said "mum mum" and gave me a hug.

We aren't sure if Jenelle had a little stomach bug, or if the vomiting was from the Dilantin. Dr. Shield's office recommended increasing the Vimpat to see if that helped. We are scheduled to see him again in November, but he may try to get us in sooner. Until yesterday, Jenelle's seizures had been under control, and we really didn't have any indication that this would happen. We are grateful that she is acting like herself and hopefully done with seizures for a while.

Thanks for the continued thoughts and prayers. I'll keep you posted.

Crappy day for Mom ends with a spectacular milestone for Jenelle!

2010-09-27T20:36:00.000-07:00

I've been sick today with what my oncologist thinks is a nasty flu virus going around. Headache, vomiting and stomach problems kept me from work today. I still have a headaches, but I'm hungry, so that is good.

While getting Jenelle ready for bed this evening, I found an old switch toy that she hadn't played with in a long time. The toy (that is operated by a big red button switch so Jenelle can easily activate it) is a light table with see thru color blocks that are used with the light. Wondering if the battery still worked, I plugged it in to find it still working.

I started to show Jenelle the various colors on the light table and tried to get her to activate the switch. She wasn't very interested. As a last effort to keep her interested in the toy, I asked her to "Show me the green one. Grab the green one." She sat still. Thought for a minute, then used her right hand to reach for and grab the green block. It was so exciting! Her grasp wasn't strong enough to give me the block, but she definitely made an effort and choose the right color (out of four on the screen!)

I called for Jack to come see what Jenelle could do. He tried to help her, but I think having an audience gave her a little stage fright. She did make an attempt when Jack asked for the yellow one, but started to be interested in other toys.

So exciting to see Jenelle doing new things. I just know that she understands what we say, just how to make that communication connection. That is all we need to figure out!

Thanks for continued thoughts and prayers. I'll keep you posted!

Back to School means Runny Noses!

2010-09-20T08:19:00.000-07:00

Since starting Vimpat last week, Jenelle has been doing OK. We started seeing some increase in seizures on Thursday and started to wonder if it was the change in medication. However, on Friday morning, Jenelle woke with a clear runny nose, so that could be the reason for the increase in seizures as well.

On Saturday, Jenelle was very cranky and her runny nose was pretty bad. Fearing she might have an ear infection, I took her to urgent care where we had the quickest visit in history! The doctor checked her ears and they were fine. Because she has not had a fever with this runny nose, we're going to chalk the runny nose and increase in seizures up to a viral cold.

Unfortunately, she has now passed it onto Jack and me. I was supposed to re-start ATRA today (my vitamin A chemotherapy) but decided to wait until the I'm feeling a bit better. Ah, the joys of back to school.

Speaking of school, Jenelle's IEP last Thursday went exceptionally well. Our school district finally signed off on her IEP and agreed that the best placement for Jenelle this year is to remain in her current program with the County. Jenelle has met 15 of 25 goals, and her physical therapy is going to be "decreased" because there is not much more they can offer her at this time. I know that sounds strange, but when Jenelle arrived at age 3, she couldn't sit up, she couldn't stand or walk. We often wondered if it would even be a good idea to try to teach her these things, but as she improved and grew, she got brave and eventually overcame the odds. Her physical therapist will continue to help Jenelle with stairs, but for the most part, she has mastered sitting, standing and walking. She's our miracle girl!

That is all for now. I'll keep you posted.

Headaches

2010-09-11T16:01:00.001-07:00

Since my last update below, I've been through quite an ordeal. The headache pain I experienced on Tuesday and Wednesday was pretty painful. I've never had migraines, and the closest thing to head pain is usually related to sinus issues. With the pain I've endured in the last few days, I've literally wanted to bash my head in to make it stop. Finally, we think we have some answers, and today has been cautiously pain free.

As it turned out, the original headache I suffered from over last weekend until Wednesday was from the Biaxin. A nasty little side effect, and I'll make a note to myself to never take it again. But as my original headache began to subside, I was sidelined with a different headache pain. Intense pressure in my head that was worse when I stood up or was moving. This my doctors have determined was a "spinal headache" as a result of the spinal tap I had on Tuesday. Joy!

As mentioned, I started ATRA (my Vitamin A chemo) on Monday because I am scheduled to take it every three months. A side effect of ATRA is that you can get dehydrated easily. You have to double your water intake with ATRA and even then my skin is flaky dry. Once my oncologist realized I was suffering from a spinal headache, she stopped the ATRA. I need to stay hydrated, and taking a medication that will dehydrate me won't help. Even if it is chemo.

Like I said, today has been cautiously good. I'm still a bit fatigued, but at least I have an appetite, and I'm drinking my fluids. I hope this means I'm out of the woods, and that I can make it to work on Monday (and to Brett's office to get my car!)

Thank you all for the continued thoughts and prayers. I'll keep you posted!

Girl's update!

2010-09-08T17:19:00.000-07:00

Since our last follow up appointment at UCLA, in June, there has been a lot of good and not so good things happening for the Curran Girls. Let's bring you all up to speed, and start with Jenelle:

The medication changes for Jenelle have gone smoothly thus far. It took a few weeks, but we finally got her on a proper dose of Risperdol for her behavior. The difference is amazing. The sad part of the medication increase is that Jenelle appears docile, and "drugged" most of the time, which is most certainly the case. But with the overall calmness in her, is seems she has more control of herself. Not as much kicking and biting (which is good) and less pulling her hair out too. Now that we've finally mastered the right dose of Risperdol, we are going to start the Vimpant next week.

The summer passed for Jenelle pretty smoothly as far as seizures are concerned, but we had a few hiccups with her mic-key button/g-tube. One Saturday morning in August, Jenelle and I were home alone, while Jack and Brett were at football practice. We had a lovely morning and I had just fed Jenelle lunch. After lunch, I was planning a trip with Jenelle to the grocery store, and as we walked down the hall to the garage, I saw something on the floor in the hall... her mic-key button! Apparently, it had fallen out!

Immediately, I got our spare and took Jenelle to her room so I could reinsert it. I'd been told that if they are out longer than an hour, the hole to her stomach can seal up. I had no idea how long it had been out, but realized that when I fed her lunch, I didn't notice any "contents" oozing from her stomach, so it could have been a while. I tried to insert the replacement mic-key button, and it wouldn't budge. So, off to the ER we went where they saw us immediately. Since Jenelle has had her mic-key button for 5 years, the ER doctor told me it was unlikely that is sealed up. They applied a little lidocaine, and with a lot of effort they were able to get her mic-key button in! Jenelle giggled throughout the process.

The following Monday, I called our medical supply company to order a new replacement mic-key button, and they said they did not have authorization and that we'd need to see her GI. Luckily, Jenelle got in for a cancellation appointment the next day and we saw Dr. Idriese. Jenelle was due for her annual visit anyway.

All year I had been planning to ask Dr. Idriese if we were ready to completely get rid of the mic-key button. Jenelle has been taking food and medication by mouth for months now, and in light of our recent emergency, I thought it would be a good idea. Dr. Idriese didn't agree and made me realize that Jenelle will always be medically fragile, and if she were to get sick, she would get sick very fast so it was good to have a safe guard in place. Dr. Idriese was very impressed with Jenelle's new eating skills, and said that Jenelle was actually a "little overweight" on the chart for her age! (HUH?) If you've seen Jenelle in person recently, you know that she is far from overweight. If anything, she is so muscular, the muscle mass could be the factor on the scale. Anyway, Dr. Idriese took Jenelle off Pediasure and wants to see her in 3 months to make sure she is getting enough vitamins.

Jenelle has had a wonderful summer and is doing more new things. Recently, she has started reaching out and "retuning" hugs. She will actually put her arm around your neck. It is absolutely adorable. Also, Aunt Nicki was the proud recipient of Jenelle's first kiss (that Jenelle planted on Nicki!) Jenelle is just a love bug, and very happy. We couldn't be more pleased.

As for me, my summer has not gone so smoothly. I caught a cold/sinus infection in June and it just hasn't been easy to get rid of. When I last saw my oncologist, she told me she wanted to start seeing me every two months instead of every month. This had me very excited until the nurse practitioner called me in August to know why I hadn't been in to see her. Apparently, I still have to make the trip to UCLA every month, I just get to see the doctor every other month! So, I went to see the nurse practitioner, Karolina last Friday and all was well except that I had another sinus infection. This is my 4th sinus infection since June, so Karolina wants to get me into an ENT to make sure all is well. She prescribed me a really strong antibiotic on Friday (Biaxin) for 14 days and she wanted me to start again on the ATRA (Vitamin A Chemo) on Monday.

I started Biaxin on Saturday, and noticed that I started to have a dull headache throughout the day. We had a wonderful Labor Day weekend with lots of swimming and parties, but nothing stressful. On Monday, I started my ATRA, and by that evening, I had the worst headache of my life. I started vomiting, and my vision was blurry, so Brett and I paged Dr. Territo. She called back right away and told me to go to the ER.

Because it was close to midnight, I decided to try to make it to the morning. After some sleep, the headache was not as intense, but clearly not gone, so Brett took me to the ER where I got in very quickly. Because of my history with Leukemia, the ER took it very seriously and ordered a CT Scan right away. Prior to the scan I got an IV and a wonderful drug (Dilauted) that made the pain go away. The ER doctor called Dr. Territo and they both agreed, if the CT did not show a tumor or brain bleed, they wanted a spinal tap to rule out meningitis. Lucky me, the CT scan was clear (or "anatomically" correct as Brett argued with the doctor because Brett refused to believe I had a normal brain) so they prepped me for the spinal tap.

Compared to an epidural, and a bone marrow biopsy; the spinal tap was a breeze. I had to lie flat for an hour after and to wait for the results - which were normal. They did send some of the spinal fluid out for a culture test, but I won't have that result for another day or two. Having had cancer, it's one of those things we've learned all too well with Jenelle that you have to rule everything out as they could get out of hand quickly if undiagnosed. I'm relieved it isn't something serious, but am still in pain with the headaches that come and go. I spoke to Karolina today, and they have decided to stop the Biaxin. I hope that is the culprit, and that tomorrow is a new pain free day!

So, that should bring you up to date on the Curran Girls. Jack started school last Thursday at a new school and absolutely loves it. Last May, we decided to move him to our local public school so that he could be with friends from Little League. So far, the change has been great! He and Brett are both busy with football, and slowly we are getting into the coming Fall season.

Jenelle starts school tomorrow in the same program that she was in last year with the County. Her IEP is next Thursday, and Tustin Unified would still like to move Jenelle to a new school. Obviously, with the changes we plan to start with her seizure medications we would like to keep Jenelle in her same school, and in an environment where her teachers and caregivers know how to recognize her seizures. Hopefully the District will agree.

Thank you for continued thoughts and prayers - I'll keep you posted!

As promised quite a while ago... photos.

2010-09-01T12:08:00.000-07:00

I must apologize... my updates are turning into "monthly" updates. Over the summer, I kept battling illness from sinus infections (and low counts and exhaustion.) Suddenly today I realized I hadn't posted the photos I uploaded two weeks ago... and promised to share a month ago. Things have been good, I'm just taking more time to rest myself. Anyway... as promised, photos!

Jack was voted onto the Tustin Eastern Little League All Star Team and the All Star Manager, Walter McMahon asked Brett to help him coach the team. So summer started off with Little League All Star madness. A special treat for Jack in being an All Star was that the games in his tournament (the 9/10 Pool Play Bracket) were all played on Curran Field at North East Santa Ana Little League. What an honor. Here is a photo of Jack stealing home in his first All Star Game on Curran Field - photo taken by Aunt Nicki Curran.

Here is a photo I managed to snap between the chain link fence. Brett coaching 1st base, Jack on 1st base and Curran Field in the background.

Almost the perfect Christmas Photo - just missing Jenelle who was asleep in the shade. Here we are posing after the game in front of the Curran Field scoreboard. And yes, for those that don't know, the field was named in honor of Brett's family, and all their many years of volunteer work for Little League and North East Santa Ana Little League.

It certainly was an All Star Summer with the 2010 MLB All Star Game in Anaheim this year. We took Jack and two friends to the MLB Fan Fest at Anaheim Stadium during the All Star Break and it was quite a treat for the serious baseball fans at heart. The Topps booth handed out free baseball cards to the boys, and in the midst of all the baseball fun, they took off to a secluded corner to "check out the cards".

Here is Jack enjoying our favorite summer treat, Ice Cream Drumsticks, with his friend Cousin Trevor, Tim and Connor.

Nana and Poppa George (my Mom and Dad) stopped by for breakfast on July 5 on their way to my cousin's daughter's wedding in San Diego. Although Mom wanted IHOP, I made some great pancakes at home.

Here is our sweetheart on 4th of July - loved her pony tails this year with the red, white and blue "firework" hair bows.

And during 4th of July weekend, we took the kids to "Big Bang Friday" at the Angels game. Here I am with Jack.

Daddy & Jenelle

Daddy gets the best laughs from Jenelle. She really enjoyed the game and the fireworks.

That is all for now, but that is not the end of our summer. I'll update more when I can.

Video tribute from a fan!

2010-08-02T23:45:00.000-07:00

Today I received a link to a video created by one of our blog followers. A stranger who has been watching Jenelle's progress for many, many years. The video is beautiful, and I can't watch without crying.

Thank you all for the continued support. Sharing Jenelle with everyone is one of the best parts of being Jenelle's Mom. Thank you to reader Vicky for creating this video!

Enjoy!

Girls follow up day at UCLA - Video EEG results

2010-07-19T23:14:00.000-07:00

Jenelle and I had follow up appointments today at UCLA. Amazingly, I managed to schedule both appointments for this afternoon - a feat in itself! I had a blood draw first, then we met with Dr. Shields, followed by my appointment with my oncologist Dr. Territo. Good news was the result all around!

First, we met with Dr. Shields to discuss the results from Jenelle's video EEG in June. If you recall, we were concerned that Jenelle was having spasm seizures again, which could have put us back on some nasty meds. Dr. Shields said it was an urgent question that needed to be answered, and the Video EEG ruled out any instance of spasms. Some of the physical things we were seeing in Jenelle during seizures and when waking were definitely not spasms. That was a relief to hear.

The other good news in the EEG results were that we captured a few of Jenelle's "staring" absence seizures (also known as complex partial seizures.) Of course, Jenelle always has to be different from the norm. While her seizures look like classic absence seizures (staring, smacking lips, drooling and picking of clothes or skin with the hands during the seizure) Jenelle's absence seizure look more like a generalized seizure on the EEG. I know that sounds confusing, and it is. To make it easy for everyone, the EEG confirmed seizure activity, but thankfully it was not bad as we feared.

So where do we go from here? With a child like Jenelle, who is obviously always going to have seizures, we need to determine the best course of action to take without hindering her progress. Yes, Jenelle has had too many seizures in the last few months; two trips to the ER by ambulance are two too many. But, we always have to focus on seizure control as opposed to trying to be seizure free. Jenelle is progressing, developing and doing well. And, seizures are a part of her daily life. Do we want to risk her progress by trying to obtain something that isn't realistic? The answer of course is no. We will only be at that point should we find that Jenelle starts losing skills because of her seizures.

As for her medications, Jenelle is already almost to the max of the drug Felbatol. This means, there is no room to increase the dose. Dr. Shields has been studying a new drug that has recently been approved for use in patients with Lennox Gastaut Syndrome. It is called Vimpant, and apparently it works well on complex partial seizures. He wants to give it a try to see if it can make a difference, and help reduce the absence seizures (also called complex partial) we are seeing in Jenelle. Vimpant is only approved by the FDA for children with a diagnosis of LGS. We may have some trouble getting it, so we are not starting right away (thought I have a prescription to get the process started with our pharmacy.)

In the mean time, we mentioned that Jenelle's behavior of late has been a little worse. For those of you who know her in person, Jenelle is very strong and very active. Lately, she has started to kick and pull her hair and bite. Obviously, these are not behaviors we want to leave untreated, so we are going to increase her Risperdol until we can get the behavior under control. Apparently, we have a lot of room for an increase on that medication. Once we reach a good dose to control her behavior better, we will then start our wean onto Vimpant. We see Dr. Shields again in early November, and that should be good timing wise to see what effect, if any, Vimpant has on Jenelle's seizures.

Our focus in the coming months will be to make these changes in medication with as little disruption to Jenelle's daily living as possible. Please keep her in your positive thoughts and prayers that things so smoothly.

As for my follow up appointment today, my numbers (from the blood work) are good and I am still cancer free. I haven't updated in a while because I got sick just before 4th of July. On June 29, I left work with a sore throat. My blood work from the week before showed a drop in my neutrophil and white blood cell count. I spoke to the nurse and she told that I could be getting sick. The next morning I really felt horrible and decided to stay home. I called the nurse again and she asked me to have my blood work done again so she could make sure my numbers hadn't fallen. The numbers were the same and my neutrophils were at 800 (remember anything below 500 and I get a lovely stay at the hospital). They had me stop my daily chemo regime. The next day, I started running a fever of 100.7 (anything over 100 for me is considered a fever, especially when my counts are below 1,000.) The doctor put me on a Z-pack and told me not to return to work. After a few days on the antibiotic, I started to feel better, but still very fatigued.

Work has been extremely busy of late, and that hasn't really helped me rest much. Just when I think I can start to take on more, my body find a way to remind me that my health is still fragile. Brett has been wonderful and is giving me some much needed rest at home. Baseball has kept us busy with the All Star Game and the festivities surrounding it last week. I have some fun photos to share soon. Jack's travel ball team that Brett coaches has had two tournaments out of town. While it is fun, I am saying no to certain things like Angels games and after game parties with Jack's team so as not to over do. I remind myself that just a year ago, I did not have the strength to do nearly as much as I do today. I try to remember to do one thing at a time, and try not to overdo.

So good news all around for the Curran girls. I do have many fun photos to share, but right now my body is telling me to get some sleep as tomorrow is a busy day at work. Thank you for the continued thoughts and prayers. I'll keep you posted!

Jenelle eating a cup cake

2010-06-27T12:26:00.000-07:00

One of Jenelle's new goals in school is to start using her hands to feed herself. At school, they are using Cheese-it Crackers and having some success. On Father's Day, I made some lemon cup cakes and decided to let Jenelle try to eat one on her own while I frosted them. Jack tried to get involved as well. Enjoy!

Summer Begins...

2010-06-18T21:36:00.001-07:00

Jack finished the last day of 3rd grade on Wednesday, so Summer has official begun at the Curran house. To celebrate, I thought I'd share some photos. First, here are some photos from the girl's slumber party at UCLA:

First we have Jenelle with her "Princess Hat" that helped to keep her from pulling out the EEG connectors that were glued to her head. That hat lasted all of an hour before she pulled it off (at least the probes stayed put!)

Here is a photo of our room - can you see Pauley Pavillion out the window in the background? In the foreground, you can see the EEG monitor. The waves are chaotic because Jenelle was wiggly, not because she was seizing.

Here is Jenelle the next morning - just starting to get irritated with the whole thing.

And you may think this is an odd photo, but I just had to share. This is the gurney in the ER. Now, if there are any "Grey's Anatomy" fans out there, you may notice that in the show, patients often have pink or navy or peach colored sheets. For those of us who are "frequent fliers" in hospitals, we know this is a bunch of hog wash. Hospitals use white sheets so they can bleach the heck out of them!

This photo below is of the gurney in the ER at UCLA. I immediately noticed that is was a soft cotton jersey like material, and definitely not white. I made a comment to our nurse, and he told me it was something "new" they were trying. They had hoped that the softness of the sheets, and the color would be soothing to patients. I must say, it looked comfy, and definitely "soothing!"

Jack's last assignment for 3rd grade was an oral report on a sports figure that is no longer playing their sport. No, Jack has not converted to being a Red Sox fan, but he did do an oral report on Ted Williams, the Greatest Hitter ever. Here is Jack working on his poster of Ted Williams.

The night before Jack's last day of school, he and Daddy got into a "tickle fight" which lead into a dog pile. Jenelle enjoyed their laughter so much, she decided to get in on the fun. So Jack and Daddy in turn dog piled on Jenelle. As you can see, she loved every minute of it!

Finally, tomorrow is the first game for the Little League 9 and 10 year old All Star Tournament. Jack (who goes by the nick name "JD" in baseball) was voted onto the All Star team by the coaches. We are very proud of him. I had to decorate the car to show off our pride!

Go Tustin Eastern Little League!
That is all for now. Happy Father's Day - enjoy the beautiful weekend ahead!

Home without answers

2010-06-13T12:12:00.000-07:00

Jenelle and I left UCLA on Wednesday afternoon with few answers from her EEG. Dr. Shields wants to review all 24 hours and see us in 4 weeks. In the meantime, no change in medications. From the preliminary report, Dr. Shields feels that Jenelle is not having spasms, so that is good news. Why she has had an increase in seizures, we still don't know.

I started ATRA (Vitamin A, my third chemo med) on Thursday and I've been really tired. Watching Jenelle in the hospital for two days didn't help. Thankfully, Brett has let me sleep in all weekend. It was very challenging trying to keep Jenelle in a hospital bed for two days. She fell out three times; once I caught her, and the other two times she fell to the floor. She wasn't hurt, but a little startled. I'm glad to be home.

That is all for now. I will keep you posted. Thank you for sending those seizure vibes. Whether or not it worked, we have yet to know.

The other side

2010-06-08T22:23:00.000-07:00

In 7 years, I've really learned a lot about reading an EEG. The waves on the screen look like seismic quakes. I can tell when she seizes, and when the waves are normal. Some of the large waves look like seizures, but they are normal - usually because she is moving. But right now, she is in a deep sleep, and the waves are everywhere on the screen. It makes me wonder, has she been having seizures in her sleep without us knowing? Another question for Dr. Shields in the morning.

This is a strange experience for me, being on the other side of the hospital bed. The care giver and not the patient. I know this hospital so well. I lived here for a month of my life. I'm not used to this side of the bed. I went down a bit ago after Jenelle fell into a deep sleep to get something at the dinning commons. When I came back in, I had to show ID. I didn't realize you had to do that, I guess because I was always a patient. My food came from room service, and I didn't parade in the lobby after 9:00 p.m.

A year ago, I was dying at the hospital in Santa Monica. I've amused myself looking at the calendar of late, because I barely remember anything this time last year. Looking back at the blog entries helps. Jenelle's room is set up exactly the same as the one where I spent one of the worst month of my life. Not remembering that time is unavoidable. Yet, I remind myself that I am fine now. I survived, so I could continue to be a caregiver to Jenelle. So I could sit on the other side of the bed with her.

Brett had to stay home with Jack today. Jack was voted onto the 9 & 10 Year old All Star Team, and Brett is helping to coach. Jack has school and they have practice. Brett would love Jenelle's room - it overlooks Pauley Pavilion, and the football practice field. My room was on the other side. Brett always wanted me to ask to be moved.

Thank you for the continued thoughts, seizure vibes and prayers. I'm exhausted, but I'll keep you posted.

Finally in a room

2010-06-08T18:51:00.001-07:00

Start sending those seizure vibes!

We finally got a room around 5:00. Dr. Shields came to see us in the ER, and had the EEG technician put the electrodes on Jenelle while in the ER so we didn't waste any time once we got a room. Unfortunately, just as the tech finished putting on the EEG electrodes, Jenelle had a huge tonic seizure requiring oxygen (I think from the stress of being forced to stay still - I was lying on top of her while they put in the electrodes.) It was unfortunate, because she wasn't hooked up to the EEG yet.

We are now in our room waiting for dinner to arrive (Mac N Cheese for Jenelle - I'll fend for myself later tonight when she's asleep.) Jenelle has had a seizure since we got up to her room (and while hooked onto the EEG), so that's a good thing. Hopefully we'll get some answers.

I'll keep you posted.

And, we wait...

2010-06-08T13:02:00.000-07:00

When we arrived at UCLA Mattel Children's around 11:00 this morning, admissions wanted to turn us away because they didn't have beds. While in the admissions waiting room, Jenelle's neurologist called me on my cell phone and told me to go to the ER to get admitted from there. Dr. Shields wants to get her EEG ASAP, and wanted them to know this wasn't an elective admission.

So, right now we are sitting in the ER waiting for a bed. I feel horrible, like we're using valuable resources just to get admitted, but at least the ER is not busy right now.

The only good thing (if you can call it that) is that since we arrived in the ER, Jenelle has had 8 seizures, the longest going 4 minutes (in the last hour). I just hope she keeps having them for the EEG, if we get admitted.

So, for right now, send seizure vibes, but send "get a bed" vibes first! ;) I'll keep you posted.

Off to UCLA for a girls slumber party!

2010-06-08T09:37:00.000-07:00

Jenelle and I are on our way to UCLA for her 24 hour video EEG. Please send lots of seizure vibes for Jenelle (yes, we want her to have seizures during the EEG) so she can give the doctors lots of information. I'll post more when we get there!

Cancer Survivor's Day @ Team in Training/San Diego

2010-06-06T17:50:00.000-07:00

The first Sunday of June is National Cancer Survivor's Day. I consider today my first (and not last) celebration of this day, because a year ago to this day, even though I was cancer free, I almost died from neutropenic fever. In honor of this special day, I made the trip to San Diego with Jenelle and Brett's Aunt Nicki to cheer on Brett's cousin Bridget as she ran the San Diego Rock N Roll Marathon with Team in Training. Even as a spectator, it was such an inspirational event!

I made a sign with "Go Bridget" on one side and "KCA" on the other. We arrived around 9:00 a.m. at the 16 mile mark and started cheering on the runners. It was so amazing. Many loved our "KCA" sign, and sometimes I would yell "Thank you from a Survivor" and I would get applause. It was awesome. Bridget had no idea that we were going to cheer her on, and was surprised and excited to see us with our huge sign! We thought if she saw us at the 16 mile mark, she'd be willing to go the last 10!

After seeing Bridget pass the 16 mile mark, we took our time to get some lunch, and then park at Qualcomm Stadium to take the Trolley to Sea World for the finish line. Our timing was perfect, and we arrived about 20 minutes before Bridget came across the finish line. After we went to the Team in Training tent and again I was really inspired to see all the participants. I've always thought a marathon was out of my reach, but if Bridget can do it, if I can beat cancer.... well, maybe someday, and definitely with Team in Training!

Jenelle enjoyed the day as well, but had a few seizures today. Speaking of which, we are scheduled for her 24 hour video EEG for this Tuesday at UCLA. I'm waiting for confirmation, but am pretty sure things are still a go. I'm glad we got in soon, because I'd like to get an answer one way or another about her seizures.

I will update later on Jenelle when I have more information. Here are some photos for you to enjoy!

Jenelle and Nicki at the 16 mile mark waiting for Bridget.

"Kick Cancer's Ass"

"Bridget surprised to see us!"

"Bridget crossing the finish line!"

Go Team! KCA!

Girls day at UCLA

2010-05-18T21:56:00.000-07:00

Jenelle and I spent the day together yesterday seeing our specialists at UCLA. It was literally a miracle to get both appointments scheduled for the same day. Thankfully, we were able to get up there and back without any major delays.

Jenelle had her appointment first with Dr. Shields. Of course, we had lots to discuss with her two recent trips to the ER for seizures. Last week, another Mom from my epilepsy support group e-mailed everyone to report that her daughter (who has LGS and is similar in age to Jenelle) had a follow up at UCLA and they thought she might be having infantile spasms again. I thought this update was interesting, because Jenelle's seizures last Saturday reminded me of the seizures she had when she was having infantile spasms more than 6 years ago.

Infantile spasms is a very severe form of epilepsy that needs to be treated quickly. It usually occurs in infants, ages 6 months to 2 years. If you recall, Jenelle was first diagnosed with infantile spasms at age 10 months. She was having over 300+ seizures a day. We first tried a steroid treatment ACTH, but ultimately used the drug Vigabatrin (obtained from Canada because it was not FDA approved) to help her spasms go away. If untreated, infantile spasms can cause brain damage, and further regression in development.

I was so thankful this Mom had sent the timely update, because I thought it was impossible to have infantile spasms again, until I asked Dr. Shields if it was possible. He said it is possible to have "epileptic spasms" and he wants a 24 hour video EEG to see if Jenelle's brain waves demonstrate the typical hypsarythmia pattern associated with infantile spasms/epileptic spasms has returned. If it has, Jenelle will have to go back on Vigabatrin. The good news in that is that Vigabatrin is now FDA approved, and we can get it here without the trouble of ordering it from Canada and paying for it out of pocket.

If the EEG does not confirm epileptic spasms, Dr. Shields wants to add a new drug to Jenelle's anti-seizure medications called Vimpat. Jenelle is already at the maximum dose of Felbatol, so he thinks its a good idea to add on another drug that we may be able to switch to completely. Either way, Jenelle is having more seizures so we need to figure out what is going on and made a decision on the best course of action. This will be a slow process as we need to do one thing at a time. First we need to determine if Jenelle is having spasms again. The Video EEG will hopefully give us some answers.

As always, Dr. Shields was very happy to see Jenelle's progress. She was in an excellent mood and was very happy. He was so pleased to see her act so different.

After seeing Dr. Shields, I had a follow up with Dr. Territo. All of my blood levels and counts are good and things remain good for me. This month will be one year since my awful reaction to my last dose of IV Chemo - or as I told Dr. Territo, one year since I almost died! She was also excited that in August, it will be one year on maintenance chemo, with one year down and one to go!

This weekend, Brett and I hosted the semi-annual Texas Hold'em Poker Tournament at our home and raised $515 for the Leukemia Lymphoma Society to help support Brett's cousin Bridget participate in the Team In Training Rock N Roll Marathon in San Diego! Good luck Bridget! If you would like to make a donation for Bridget, please check out her donation page by clicking here.

That is all for now. Thanks for the continued thoughts and prayers. I'll keep you posted!

Quality Time with JD & The Batting Stance Guy

2010-05-18T18:11:00.000-07:00

Last Thursday after baseball practice, I took Jack (JD) and two friends Isaiah and Grant to a book signing at Barnes N Nobel in Huntington Beach. The You Tube celebrity Gar Ryness aka "The Batting Stance Guy" has just published a book about the talent he describes as "the least marketable skill in America." He imitates MLB ball player batting stances. And he's pretty hysterical. The book is called "The Batting Stance Guy: A Love Letter to Baseball" and can be purchased everywhere.

I feel like I've known BSG for a long time now. I've been following him for over a year when he first started posting videos on You Tube. After his videos first came out, I started e-mailing him to harass him into imitating the Angels; specifically players like Jim Edmonds, Chili Davis, JT Snow and Vlad Guerrero. I was always impressed because he always replied to my e-mail. The day before the book signing event in Huntington Beach, BSG posted on my Facebook page that he hoped to see me there. To my surprise, when we walked up to get our books autographed, he recognized me. The boys were totally impressed and had a blast. I think the Batting Stance Guy enjoyed having them ask him all sorts of questions as well. It was a total "win win."

Here are some photos from our fun evening.

Jack, Me, The Batting Stance Guy, Isaiah and Grant

Jack learning to imitate Gary Sheffield.

The Batting Stance Guy autographing JD's wiffle ball bat. Notice the news crew from Japan in the background? The boys thought it was fantastic that they were going to be on TV, until they learned it was going to air in Japan!

Here is a video of their Q & A:

All clear!

2010-05-14T15:49:00.000-07:00

Quickly - I just got back from the pulmonologist and I have the "all clear" on my CT Scan and PFT test. He believes what they are seeing is just chemo scar tissue. Thank you for the thoughts and prayers. I have some updating to do, but I'm off to watch Jack's last Little League game of the season! Go Cardinals!

Another Ambulance Ride!

2010-05-09T20:24:00.000-07:00

Our weekend was not short of drama unfortunately. Miss Jenelle had some pretty bad seizures at the baseball field on Saturday and had to be transported by ambulance to the ER, where she was released two hours later. We don't know what brought them on, but the ER took a urine sample to make sure her UTI from two weeks ago was gone.

She had been acting fine in the morning on Saturday, and even participated in her Challenger game. She was happy during the game, but had been pretty cranky Friday evening, and shortly after the game. We couldn't quite figure out the crankiness, other than thinking she was hungry. Jack had a baseball game about an hour and a half after Jenelle's so she and I had waited for it to start hanging around the snack bar. Saturday was pretty warm.

Jack's game started around 11:30. I was supposed to keep score, but another parent who thought she had a commitment was able to take over for me. This turned out to be a good thing since I was able to be with Grandma and Grandpa when Jenelle started having seizures during the game. Coincidentally, Brett (who manages Jack's team) was watching the game from his car on a side street due to his being "suspended" from managing this game. That's another story in itself, but turned out to be a fortunate twist as he was able to go to the ER with Jenelle and me.

During the 3rd inning, I was helping the coaches with pitch count, and was near the score keeping booth. When the inning ended, I went back to sit with Grandma, Grandpa and Jenelle. Grandma motioned for me to be quiet because Jenelle had "fallen asleep." Jenelle was lying on the ground behind our chairs. Five or ten minute later, I noticed Jenelle moving as if she was trying to wake. I looked behind my chair to check on her and realized she was seizing. Grandma and I quickly got her comfortable and started to time the seizure. When she approached the 5 minute mark, Grandma told me to give her Diastat.

In my mind, I was hoping she would just come around again because I didn't want the distraction of calling 911 for Jack's team and because Brett wasn't allowed on the field. But when I realized that her seizure wasn't stopping, and that she could have been seizing when Grandma thought she was asleep, I figured it was better to be safe than sorry. When Jenelle had Diastat two weeks ago, her heart rate dropped as did her oxygen intake. Being in the middle of school grounds so far away from my car and home, it was a good decision. We gave Jenelle Diastat, and called 911.

Brett was able to open the gate and flag the ambulance onto the field so they could get to Jenelle. She was still non-responsive so they put her on oxygen. We decided that Brett should go in the ambulance with Jenelle to the ER, and I followed in my car. As it turned out, I beat the ambulance to the ER. Brett said her heart rate was very low and the ambulance actually used lights and sirens to get there (to my credit, I left before they were off the field.) I felt horrible for Jack as he was still playing his game, and could only watch. He's been so used to this in his lifetime that he handled it well. Grandma and Grandpa stayed behind to be with him.

At the ER they took blood and inserted an IV. Before they could get her on fluids, Jenelle started to wake and was pretty cranky. Because of her UTI two weeks ago, they took urine to get a culture and we should know the results tomorrow. Because she had no other signs of illness (fever, etc.) they didn't feel a need to run blood work. After an hour and a half, we were released. Jenelle has been sleepy and cranky ever since, but is doing fine.

We see Dr. Shields a week from Monday, so we have a lot of questions for him. We've had a wonderful and restful Sunday. The kids gave me some wonderful handmade gifts and we had a wonderful brunch with our family this morning.

Sadly, on Saturday evening we learned the news that our little league friend who had leukemia (I mentioned him earlier in the season) passed away around the same time Jenelle was transported to the ER. We are keeping the Abbey family in our thoughts and prayers. It has been a tough weekend for our Little League family, but we are so appreciative of all the love and support from everyone. Thanks again for the thoughts and prayers. I'll keep you posted.

The Special Mom, by Erma Bombeck

2010-05-07T23:04:00.000-07:00

Well, this weekend is Mother's Day and I haven't shared this one in a few years, so I thought I'd post it again. I want to share with you my favorite Erma Bombeck writing about "special" Moms in honor of Mother's Day.

I must note that I disagree with Erma on one part of this piece - we (special needs moms) are not saints, we are just doing what any parent would do. For the most part, Erma has perfectly described all that God has shown me in my very special daughter. Enjoy and Happy Mother's Day!

The Special Mom by Erma Bombeck, 1980

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter, patron saint, Cecilia. Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world, and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma'* for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see . . . ignorance, cruelty, prejudice . . . and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised midair. God smiles. "A mirror will suffice."

*Re-reading this again brought tears to my eyes. It took 6 years for Jenelle to finally say "Momma" for the first time, and I had to hear it on the telephone while in a hospital bed when I was hitting the worst of induction chemo. And even in the most difficult of times for me, I understood the silver lining God had planned. My absence from home gave Jenelle the strength to find her voice and speak my name. That tiny miracle helped me get through my cancer. God truly does work in mysterious ways.

Another test this Friday

2010-05-05T21:44:00.001-07:00

Just wanted to check in briefly since so many of you have been asking about the results of my CT scan last Friday. The answer is I don't know yet. I called my pulmonologist this morning and his nurse would not give me anything over the phone (which is pretty standard HIPPA practice these days). She told me that Dr. Ross wanted me to have a Pulmonary Function Test in addition to the CT scan, and that after I've done that, he will go over the results of both with me. She also reassured me that if the CT had showed something urgent, he would have had her call me in sooner, so that is a relief.

My PFT test is scheduled for Friday at 7:15 am. I'm sleepy just thinking about it.

Jenelle is doing great. We had to take her wheelchair in this morning for some much needed repair. I spoke to her teacher and the bus company, and they think we might be able to try out a "harness" system for Jenelle to use to ride on the bus. Jenelle's walking has really improved, and she is managing stairs very well with little assistance. The "harness" is like a 5 point strap vest that can be used to secure Jenelle into a regular bus seat without the need for her wheelchair! Of course, we'd keep her chair close at hand, but it would be nice not to have to set it up every morning to get her loaded on the bus. We'll discuss the "harness" at her next IEP in September.

Jack has been doing great. I can't believe the end of school and the end of the regular Little League season are coming in the next few weeks. Jack's team is doing well, and he has become a very good pitcher. A chip off the old block. Brett is as busy as ever and currently at a Little League Board Meeting as I type. I always wonder, which last longer, the meeting, or the "after meetings?" ;)

Finally, I am sorry I didn't share the story of the photo below. Every year, our league has a professional photographer come to the games to take professional sports photos of the kids. Over the years, I've gotten to know him and he really does enjoy his work. Each year that he has photographed the Challengers, he gives all of the photos to the parents for free.

The photo below was an absolute candid moment. The photographer, Lou Sautrich, was taking photos from the out field with his telephoto lens. I was sitting on that bucket writing names of the kids on the raffle tickets in my hand - the team was raffling off tickets to that night's Angels game, and I wanted to make sure I counted each kid as they came to bat. Jenelle had just crossed home plate with her buddy, saw me sitting on the bucket and walked over to me to lean in for a hug. It was amazing. She saw me, recognized me, and came over to me as if to say, "This is my Mommy!" Although it appears that I'm looking straight at the camera, I didn't know he captured this moment until I saw it in the photo binder. It is my absolute new favorite photo. The love and joy captured in that photo just says it all. Thank you Lou!

That is all for now - I'll keep you posted.

2010-04-29T09:41:00.001-07:00

A New Look Here and A Different Follow Up...

2010-04-22T19:28:00.000-07:00

I decided to make some changes to the look of this place. I hope you like it. :)

Today I had a follow up at UCLA. It turned out to be a "not so usual" follow up. If you recall, two weeks ago I had to go to the ER for an asthma attack. As I am a firm believer in not worrying about something until there is something to worry about, I didn't mention to everyone this small little thing they found on my chest x-ray at the ER. A spot or some sort of lesion. I was instructed to follow up with my Pulmonologist, so I called his office to have them check my x-ray online. My Pulmonologist called back and said the spot was not on any of his previous scans. The last time he saw me was a few months prior to my cancer diagnosis. He instructed me to get my records from UCLA, and he wanted a second x-ray. I left a message with UCLA, and didn't think about it again until today.

When I met with the nurse practitioner today at UCLA, she asked me about my ER visit. When I explained to the nurse that my Pulmonologist wanted a second x-ray, she was concerned. She pulled my old records herself, and found that back in June (when I was in the hospital for neutropenic fever) a spot had shown up on my x-ray and CT scan. She dug into my records a little further, and noticed that the spot was also vaguely visible on a CT scan I had done in December 2008. The report said it was scar tissue from a possible pulmonary infection during induction chemo. She told me not to worry that it was most likely scar tissue, and got records and a CD of my scans ready for my Pulmonologist. She did however think his request for another x-ray wasn't enough, and tried to get authorization for an emergency CT scan at UCLA today. Insurance wouldn't approve it, so the best she could do was tomorrow at Hoag. Other than that, everything is good and I am to come back next month.

I decided to swing by my Pulmonologist's office in Huntington Beach on my way back from UCLA. Oddly enough, he had surgery earlier this week, so I knew I wasn't going to have an appointment any time soon. When I walked in, to my surprise my Pulmonologist was in the office wearing a c-spine neck brace. His nurse said she was just as surprised as I was but he apparently wanted to get started seeing patients he had to reschedule. When I gave her the records from UCLA, she asked if I had time as they had a cancellation. I decided it would help me sleep better to get it over, and agreed to read a book for an hour and wait.

Because a lot has changed with my medical history, my Pulmonologist had a lot of catching up to do. I have had two asthma attacks this week, so he decided to put me back on asthma maintenance meds. After the exam, we went into his office to talk. He pulled up my scans from UCLA, and unfortunately did not agree with my oncologist. The scar tissue UCLA had been seeing in their reports was in a different area of my lung. He did not see the new lesion that they found two weeks ago on my old scans. He agreed that I need a CT scan in the next week or so.

When a cancer patient in remission hears things like "spots" and "lesions", it tends to make one worry a little. Even if we have a firm stance on not worrying about things until there is something to worry about. When I told my Pulmonologist that I was concerned, he was a bit more reassuring. He was honest and said he didn't know if it was cancer or not, but even if it was, it isn't something that needs to be immediately treated. He said that one of my chemo drugs, Methotrexate, can offend have the side effect of scar tissue and benign lesions growing on the lungs. That last part is much more reassuring. He also said with my history of cancer, he as well as other doctors are always going to be more cautious. And for some reason, that is a comfort to hear.

Tomorrow I am going to make the appointment for the CT scan, and we should know more in two or three weeks. See, nothing to worry about! ;)

As for Jenelle, she is doing well after her bad seizures last week. The ER called on Sunday and she did have a bladder infection. She has been happy as a clam and is now on antibiotics.

That is all for now. I will keep you posted. Thank you for the continued thoughts and prayers.

Two ER Trips for April (knock wood)

2010-04-15T18:08:00.001-07:00

Well, it's only April 15, and already the Curran girls have had a trip each to the ER. Mine was less dramatic, so I'll get to that in a minute. Unfortunately, Jenelle went to the ER today via ambulance from school because of a status seizure that didn't stop with Diastat. The good news is that we are home now and Jenelle is acting fine and is playing with her toys.

Shortly after she woke up this morning, Jenelle had a couple of big seizures that were a little out of the norm, but not too concerning. By "big" I mean the seizure went for more than a minute - not "big" as in a grand mal. Daycare later told me that she too had noticed that Jenelle had had a couple "big" seizures while being loaded onto her bus. Apparently, Jenelle was fine at school, participated in "square dancing" and had a snack, but then started having some noticeable seizures. The nurse called me around 10:30 to inform me that Jenelle had been curled up on the floor during circle time and was really unresponsive. I asked the nurse if Jenelle had had any noticeable seizures, and she said she had seen some seizures, but wasn't sure if she was still having them. There were no other symptoms like fever or vomiting - just that Jenelle was very lethargic and not really her self. I decided to go pick her up from school. The nurse said she's wait to give her Diastat (valium - Jenelle's emergency seizure medication) until I got there. Luckily, there was no traffic on the 55 and I got there in 15 minutes.

When I saw Jenelle at school, I realized she was seizing and was in status (i.e. she was in a constant seizure state). At this point, Jenelle had been seizing (or having clusters of small seizure) for over an hour. The nurse gave her some Diastat, but she really didn't come out of it like she normally does after Diastat. After a minute, the nurse checked her heart rate and it was dropping after the valium so we called 911.

When the paramedics arrived, they put her on oxygen. After a few minutes, she was still unresponsive and from what I could tell was still seizing. We then took her to the ER by ambulance. I wanted them to transport her to keep an eye on her oxygen and heart rate. Brett met us at the ER.

At the ER they ran blood work, a CT scan and urine culture. Because she was still unresponsive and seizing, they gave her an IV dose of Dilantin. We spoke with the ER doctor, and explained how it is common for Jenelle to go into status, and what her seizures usually look like. Although she looked like she was sleeping, or in a "post ictal" state (i.e. not seizing), we could tell she was still seizing because of subtle jerks in her arms and legs, and because of her eyes were fixed.

About a half an hour after the Dilantin, we could tell that she had stopped seizing, and was finally in a post-ictal state; mostly sleeping. We still did not have a good feeling that she was 100%, so the doctor decided to call UCLA for advice. If we didn't have a positive feeling that she wasn't seizing, we were going to admit her. Finally, just as a nurse from CHOC came in with ID badges for admission, Jenelle woke up, sat up in bed and started acting like her normal self. With that, we felt better about taking her home instead of admitting her. (The photo above is Jenelle just after waking up in the ER.)

Before leaving, the ER doctor had all of the test results back. Her CT was fine as was her blood work. We won't know on cultures for a few more days. She did have some bacteria in her urine, so they gave us a prescription for an anti-biotic, and told us to wait for a call from them confirming a UTI before giving her the anti-biotic.

Like I said, Jenelle is home now and playing with toys. Hopefully things are back to normal for a while.

Now for me... I had an unexpected trip last week to the ER myself. I really didn't want to mention it because I feel really silly for the reason I had to go. Last week, I had an asthma attack at work - the first asthma attack I'd had in over a year and a half. I reached for the inhaler I keep in my purse and took a dose. After a few minutes, and a second dose - I realized it wasn't working and my chest was getting tighter. Then I realized, the inhaler in my purse had expired in March 2009. Oops!

I waited for a few more minutes to see if the expired inhaler would help, but only seemed to be getting worse. Eventually, I got a co-worker to drive me to the ER where they saw me right away. We had a couple of delays at the ER. First, because I was 40, and was having "tightness in my chest", they had to run an EKG to rule out heart attack. Once they determined my heart was fine, they learned that I was a cancer survivor still on maintenance chemo. Because of my chemo, they had to do a blood test to get a platelet count before administering any steroids to help my breathing. Luckily (or unluckily), they were allowed to give me Predisone, and after 30 minutes I began to feel as if I could breathe better. After confirming my platelet count was OK, they gave me two abuterol treatments and I was on my way home in time to get the kids from school.

As I thought about it, I realized that all of last year during my cancer and chemo, we had been so proactive in keeping me inside and away from germs that it probably helped my asthma at the same time. When I was initially diagnosed with Leukemia, they immediately took me off all of my maintenance asthma medications because of the steroids involved. It was like I forgot I had asthma. That attack came out of no where last week, and once again I am reminded of the limits of my own health. Thankfully, I have a new inhaler and hopefully will prevent any future trips to the ER.

So, as Brett says, the Curran girls like to compete with each other with medical drama. Thankfully, we are both fine now and hopefully we won't compete any time soon. Thanks for thoughts and prayers - and don't forget to knock on some wood after reading this! We don't want to push our luck!

A Family Tradition

2010-04-12T09:42:00.000-07:00

In case you didn't know, one of the photos below is somewhat of a tradition in our family. Every time we "go to the mountains", we always made the obligatory trip to Reimer's Candy Store in Three Rivers . As a child, I knew it as "Huffakers, " then later as "Three Rivers Country Candies." A few years ago, it became Reimer's Candy Store. This place makes their own chocolates, home made ice cream, and has wonderful gifts and unique finds. It truly is a must see if you ever travel to this part of California on your way to Sequoia National Park.

Here I am, 16 years young, posing with the "candy maker" outside the store.

Here is a photo of my parents a few years later on the "back deck" of Reimer's Candy Shop overlooking one of the rivers of Three Rivers.

Here is a photo of the first time I took Brett to the candy shop. Same photo spot as my parents above. I love the leaves in the background of this one.

And would you believe it? Here I am with Jack back in 2001 when he was 10 months old... Same location, same back porch, same river!

Three Rivers has changed so much. The Candy Store used to be the only place to stop, and now it has wine tasting, hotels, antiques, etc. If you ever make the trip, be sure to stop at Reimer's Candy Shop. Tell them Kelly sent you!

Easter Weekend Photos

2010-04-11T12:37:00.001-07:00

A few days before Easter, the kids and I took a trip to Visalia to visit my parents. It was the first trip for me since my 20 year high school reunion (September 2008), and obviously the first time I'd visited since my cancer. It was a wonderful trip and we took the kids on a day trip to Three Rivers, CA to enjoy the mountains and candy store. Jack loved it, except for the "driving" part.

Here I am with Jack at Reimer's Candy Store in Three Rivers overlooking the river.

Here are the huge boulders underneath Gateway Inn restaurant at the entrance to Sequoia National Park. We didn't go to the park because Jack was a little car sick.

One day, we went miniature golfing at the new place in Visalia. Jack had some interesting shots.

We came home in time to celebrate Easter with Brett's family. Here is the annual egg hunt with the cousins!

And on Monday, we went to Opening Day at the Angels Game! I saw with Jenelle in our seats, while Brett and Jack enjoyed the game in Diamond Club with Uncle Brad and Trevor. The Angels won, and Jenelle really did well during the game!

Hope you had a wonderful Easter holiday!

Wear purple on Friday!

2010-03-25T10:10:00.000-07:00

Learn more about Purple Day at their website. Click here.

Hair update and photos!

2010-03-23T18:20:00.000-07:00

Last week, I was taking a nap on the couch when Brett got home with the kids. Jack walked up to me and the first thing he said is, "Mommy, are you sick?" Jack asking if I was sick was something he did a year ago while I was going through chemo. If the answer was "yes", he would often play outside, or I would move to the bedroom. He seemed happy to hear that I had just been sleeping, catching up on much needed rest. Life has been busy for us, but I am cautious to take naps when I can.

With our life getting back to some form of normal these days, Jack asking if I was sick was just another reminder that our life is not exactly normal. In moments like this I can't help but think of the strong adult that he will become.

Jenelle has been great these days. Her eating continues to improve, and just last Saturday we shared our first McDonald's cheeseburgers together. After thinking about it, I couldn't remember the last time I had eaten at McDonald's. I then realized the only reason I didn't eat there before was because their menu offered little for Jenelle to eat. Now that she has mastered chewing, she did beautifully with the cheeseburger as I fed it to her in small break off bites.

My Mom will be excited to hear this next bit... I think Jenelle has a new sound. "Na Na Na Na Na" She started saying it last Saturday. The grand kids call my Mom "Nana", and even though it was just a sound, it does sound close to the real name. Brett however will disappointed if Jenelle doesn't start saying "Daddy" soon. It is all he has ever wanted to hear. Jenelle has been much more vocal recently, discovering new sounds and such. It is so exciting to watch and wonder what she will say next.

It has been some time since my last hair photo - December I think? Well, my hair is now to the point where I need to make an important decision - bangs or no bangs. I think I've already made up my mind, but I would love to hear some opinions. My hair is long enough to blow into my eyes now, and it touches my shoulders. When people see me now, they don't even realize my hair was never this short. It's still curly, and that is still taking some getting used to. Anyway, here are the photos - let me know what you think.

With bangs:

Without bangs: (and with a hair clip to boot!)

And here are some more photos for you to enjoy. A few weeks back, our home was "flocked" with a rare sighting of flamingos! The gag was courtesy of the Foothill High School Cheer team as a fundraiser to help them purchase a mascot costume. Jack and Jenelle sure did enjoy seeing the pink birds all over our lawn. Brett and I enjoyed returning the favor to some friends! Better than someone toilet papering our house I suppose.

And Jack finally got out of line one too many times.

NO - He actually did this to himself while jumping on a friend's trampoline. It looked pretty bad for a few days. We told Jack black eyes were "cool"!

And finally, Jack's NJB All Star basketball season is coming to an end this weekend, which will thankfully give him more time to enjoy baseball. This past weekend we had 3 baseball games and 3 basketball games. Above is Jack and his friend who is on both his basketball team and baseball team. After their baseball game on Sunday, they had to rush to their last basketball game. In the process, they were so rushed, they forgot to change their socks! Jack said they were their "magic socks". It almost helped them too - they lost by 1 point that game (after losing miserably earlier in the weekend.)

That is all for now. Thank you for continued thoughts and prayers.

Just a quick update ...

2010-03-16T22:34:00.000-07:00

It's been very busy at our home in the last few weeks - thankfully, we are all doing well. Little League has started again - Jenelle is in her 3rd year of Challenger Baseball and is walking the bases with ease. Jack is in AA Division, also known as the first year of kid pitch. Brett is the manager for Jack's team, and the "pitcher" for Jenelle's team. On top of baseball, Jack was voted by his teammates to the NJB All Stars. After Saturday baseball, we have Sundays filled with basketball. Like I said, we're busy, but it's been fun.

I had another follow up last week and things are still going well and cancer free for me. I am always amazed at what they can tell from my blood work. I mentioned having a runny nose to the nurse, and then because of my low red and white blood cells, the doctor put me on a Z-pak and determined I was getting a sinus infection. I just finished the ATRA regimen and am glad to get rid of the itchy skin. Of course, being on 3 chemo meds could have caused my getting a sinus infection. At least my doctor is on top of it all. I go back again next month.

That is all for now. Thanks for the continued thoughts and prayers.

Dreams...

2010-02-24T21:28:00.000-08:00

Last night, or rather around 5:30 this morning, Jenelle woke up crying. I jumped out of bed and ran to her room, fearing a seizure only to find Jenelle sitting up in bed rubbing her eyes. No seizure, and she didn't seem sick... apparently Jenelle woke herself up from a bad dream.

I crawled into her bed and tried to comfort her. Jenelle was clearly agitated and restless. Soon though, after some cuddling with Mom, she went back to sleep.

At breakfast, I mentioned to Jack that Jenelle woke up from a bad dream. Jack replied, "What was she dreaming about?" In unison, Brett and I said, "I don't know, she didn't say."

All day I've been wondering, what does Jenelle dream about? The child has a high tolerance for pain, and has no concept of fear. What could have upset her so much? Brett and our daycare provider Valeria both suggested that perhaps she was crying because there was no food. Jenelle loves food more than anything.

What do you think she dreams about?

Those darn neutrophils ...

2010-02-23T22:13:00.000-08:00

Last Thursday, I came home from work and found a message on the answering machine from my oncologist. The numbers of neutrophils from my last blood draw (the Friday before) were very low and she instructed me to stop my chemo. Knowing that the oncologist is in the clinic as late as 7:00 p.m., I called to get her on the phone. Sure enough, she answered and told me I had 700 neutrophils, and to forget about any trips to Disneyland. She asked me to go to the lab the next day for another blood draw.

The low number didn't surprise me. I felt like I had been fighting off a virus for some time. The next morning, instead of sleeping in, I went to the lab for a blood draw. Four pokes later and they had the blood they needed. The order was STAT, so I expected if it was worrisome, I would hear from the doctor ASAP. Remember, anything below 500 neutrophils and I have to be hospitalized.

The weekend came and went without any urgent calls about my numbers, and finally today I got word that everything was back to normal and I could start chemo again. I am scheduled to start ATRA (vitamin A) this week, so I expect to be a bit more fatigued toward the end of the week as I will be on three chemo meds for the next 15 days. Ironically, I was talking to my parents this afternoon, and told them how I had stopped chemo because of the low neutrophils. My Mom was surprised that I could stop and start so quickly, so I explained that it wasn't a medication that required weaning. When she asked me if I was tired, I realized that since stopping chemo last Thursday, I had been battling a little bit of insomnia. I suppose those extra days off chemo will help me this week, and hopefully my sleep patterns will get back to normal.

Cancer seems to be looming all around us lately. Two friends of ours were recently diagnosed with various forms of cancer and a third has entered hospice. A blog friend of mine donated her hair to Locks of Love and said I inspired her. I also had the opportunity to meet a wonderful little boy from our Little League who has been fighting Leukemia (ALL). He has been having a rough time of late, but really wanted to be in the team photo with his team this year. He sat there in a uniform on top of a container of baseballs with bandaged hands and a hat covering his bald head. As I introduced myself, he remembered hearing about me last year. I could tell (from experience) that he was using all of his energy to be apart of the activity of photo day. He looked tired, but he was a fighter; I could see it in his eyes.

And with that, I am reminded that cancer comes in all forms, and does not discriminate against age, sex or race. The experiences are similar, and yet different for each person. And even with the differences, for those who survive the answer is the same; life is so very precious.

This week, my firm has been selling daffodils for The American Cancer Society. With the deadline to order fast approaching, I read the e-mail with the description of each donation. For a small donation, you could purchase daffodils with or without a vase, or for a larger donation, daffodils to be given anonymously to a cancer patient. You could also purchase a teddy bear for a child with cancer. And then I remembered going through out patient chemo last March - how The American Cancer Society had a table of daffodils that they handed to each patient in the oncology waiting room. So, it is true... you can anonymously donate flowers to a cancer patient, and as I can attest, they will get into the hands of a cancer patient.

I decided to make a donation for a teddy bear to be delivered to a child with cancer. I am confident that my bear will make it to a child like the one I met on Saturday. And like the flowers, I hope it fills that child with strength to survive the battle and revel in the reward of precious life.

All I want for Valentine's Day is my Two Front Teeth!

2010-02-15T10:33:00.000-08:00

Well, Jenelle finally lost her two front teeth, and of course there is a great story to go with it. On Saturday, Jenelle and I were out and about doing lots of errands and enjoying the sun. While running errands, we stopped to have lunch at Baja Fresh. It's times like this where I get to enjoy moments of feeling normal with Jenelle. I was able to order off the menu at Baja Fresh for Jenelle (a bean and cheese burrito for me, and beans and rice for her) and we ate outside enjoying the sun. We had already been to a couple of stores, and I knew Jenelle's patience was going to run out soon.

Our second to last stop was Target. I had a few things to get, so we spent a bit of time up and down the aisles. All of a sudden, Jenelle started crying. Thinking her patience was done and this was her typical tantrum, I ignored the crying and screaming and continued to shop. After a few minutes, I felt a tap on my shoulder. A kind woman quietly tapped on my shoulder and said, "Excuse me, but your little girl is bleeding!" Yes, I am a bad mommy. I was ignoring Jenelle's cries thinking it was nothing to eventually be told by another customer that she was actually injured.

Once I realized where the blood was coming from, I knew she was OK. Jenelle finally took care of that pesky loose tooth when she was biting on her wheelchair arm. It was still hanging in her mouth, so I pulled it out and ran to the Pharmacy where they gave us towels and a bag to keep the tooth. Jenelle was quite upset - I'm assuming it hurt, and she doesn't quite understand shy she lost a tooth. Eventually she calmed down and we were able to make our last stop at the grocery store without incident.

The next day, Jenelle was very giggly. In the afternoon as I was changing her diaper, I noticed the second front tooth was gone. No blood, no tooth. I assume she swallowed it.

So that was our weekend. Last night Jenelle was all giggles and smiles and I got a great photo of her missing teeth. Here she is...

I love this photo. You can see the sheer joy in her face as Jenelle was in the process of "jumping" when I snapped this photo. She is such a wonderful girl!

Have a wonderful weekend and thank you for continued prayers. We'll keep you posted!

An update for Poppa George

2010-02-09T22:43:00.000-08:00

My Father (Poppa George) tells me that each morning, he logs onto his computer and this website is the first thing he checks. On Monday, he told me that it had been too long since my last update. Sorry Dad, this one is for you! ;)

I had been waiting to post an update hoping to share news that Jenelle had lost one of her two front teeth (which has been wiggly for a while) but alas, that darn tooth is stubborn and hasn't fallen out yet. Any day now. Unfortunately, the wiggly tooth has agitated some seizures out of Jenelle. She has had an increase in seizures lately which I hope will subside once the tooth comes out. Let's hope!

Last Sunday, the family went to Jack's school for Open House. Two days earlier, his school celebrated "Special Person's Day" and Jack choose me as his "special person". My heart just melted when he asked me. The day included a special prayer service, a craft and a tour of his classroom. Since I had already seen everything on display in Jack's class, I let Brett take the tour with Jack while I distracted Jenelle. I took Jenelle to the white board and started writing the letters in her name on the board while she watched. As I did this, Jenelle reached out and put her hand over mine as if to write her name "hand over hand". A few days later, I asked her teacher if this is something they did in school and she said "all the time!" It's so fun to see Jenelle do things in everyday life that she learned in school.

The family is getting into gear for baseball season. Brett is managing Jack's team again this year and coaching for Jenelle. And just as basketball was about to end, Jack was selected for All Stars, so it looks that we will have a few more weeks of that as well. We are so proud of Jack.

I had a follow up at UCLA today, and am still cancer free. In two weeks I will start my Vitamin A regimen again for 15 days (ATRA, my 3rd chemo medication that I take every 3 months). My blood work was good and the doctor thinks my recent fatigue is from over doing it a bit. One step forward, one step back.
Other than that, things are good!

That is all for now. Thank you for the continued prayers! Love ya Dad! ;)

First "E" Ticket ride!

2010-01-24T20:39:00.000-08:00

Lots of great things to report about our Jenelle. Her seizures remain stable and it seems every day she does something new. Unfortunately, new things have been a little "costly" of late, but I'll get to that in a minute.

On Friday Jenelle had her annual eye exam with her opthamologist. Physically, her eyes are perfect, even though she appears to be a bit near sighted. Dr. Ching, who has been following Jenelle since she was a baby, said that the improvement in her tracking is outstanding, however without her being able to communicate what she can and can't see, the quality of her vision is still unknown. Of course, we've always known that her blindness was cortical (meaning her brain was not making the connections for her to see) and we always knew it was something that would get better with time. Glasses are not an option at all for Jenelle because we really can't tell how poor her nearsightedness might be. So for now, physically the eyes look great and we'll see him in another year.

Brett has always been near sighted, and we've assumed the same for Jenelle because she tends to get up close to things when she is playing, especially if she is watching TV. She likes to get up close to the screen, and hold it from the top. This became a costly problem on Saturday when Jenelle pulled over our flat screen TV and shattered it. It was one of those "I'm thankful you didn't kill yourself but I want to kill you for doing it" moments in parenting. She is fine and was unfazed by the ordeal.

Jenelle is really quick these days around the house and has mastered going up and down the step in our entry and can not get into the room where she is not allowed (i.e. the room with many breakables still in it!) She also has mastered opening and walking through the safety gate that keeps her out of the kitchen. I was shocked the other day as I was heating oil for tacos and found Jenelle standing next to me in front of the stove. We know she loves food, and her impatience to be fed has taught her to out master the safety gate. This kid is brilliant I tell you! And did I mention she is quick?

And finally, a fun milestone to report. After being couped up inside all week because of the rain, Aunt Nicki and I took the kids to Disneyland today. Jenelle had been agitated on the ride there, but suddenly calmed down and started smiling the deeper we got into Main Street. Jenelle loves Disneyland for its bright colors and music. She does well with the rides too and will pretty much ride anything except the roller coasters, Tower of Terror, Soaring over California, and up until today, Indiana Jones.

Today I had a wild hair and decided Jenelle might enjoy Indiana Jones. Nicki and I decided to strategically sit her between us so there would be no possibility of her falling out. She sat well, smiled a couple of times, and held our hand tight throughout the whole ride. It was a new experience for her, and from what I can tell, she enjoyed it. Of course, we had some trouble at the very beginning. Just as we were starting the ride, one of the cars ahead of us broke down and had to be evacuated (cast members had to walk to them with a ladder to help them out of the car). We sat in our car for 15 minutes and Jenelle started to get a little antsy. I was relieved we didn't have to evacuate our car because Jenelle's wheelchair was back at the loading dock. After the delay, we went through. At the end, the cast members asked if we wanted to ride again because of the delay. We were already buckled in, so why not? So for her first ride on Indiana Jones, Jenelle rode twice in a row! It was fun, yet she held onto our hands tightly the entire ride.

That is all for now. I will keep you posted.

Re-posting "Why Health Care Reform Won't Work"

2010-01-12T20:50:00.000-08:00

Dr. Danielle's advice:

Monday, December 21, 2009

Why Health Care Reform Won't Work

Today I worked a day shift in the Emergency Room (i.e. business hours). In my short time, I saw 21 patients. All of the patients I saw today had some sort of medical coverage, mostly Medicaid, but some private insurance as well. Out of all of these, 19 complained about their wait time and 2 thanked me. However, much more importantly, 20 didn't need to be there and 1 person seriously had an appendix that needed to come out that second, but he had to wait 4 hours behind "ear pain," "STD check," "sore throat" and "rash." Before I started my shift, I made it a point to be sure and document if each patient had access to a primary care provider, either a pediatrician or family medicine doctor. Out of 21 patients, all 21 answered "Yes" to having a primary care doctor, and knowing how to contact them. Two patients had contacted their PMD before coming to the Emergency Room. The first one was the appy, whose pediatrician had taken one look at him and sent him straight to the ER for a surgical consult. The only other person who had actually called their PMD was a child who fell off a kitchen chair. The reasons that 19 other parents didn't call their primary care doctor and instead came to sit in the Emergency Room were as follows:

"Didn't think about it" = 6
"Couldn't get in to be seen today" (all could be seen before Christmas, however) = 9
"Don't get along with my PMD" 1
"The ER is closer than my doctor's office" = 2
"Thought this was an emergency" = 1

Just because people have medical coverage and ample access to primary care providers, does not mean our Emergency Rooms will be any less crowded. Just because people have access to a primary care provider does not mean they will not be impatient. It does not mean they will not want care "RIGHT NOW" and it surely does not mean they will understand the difference between a minor annoyance and a full blown emergency. I try to educate families on appropriate uses for the Emergency Room, and some parents actually feel comforted by that. They are glad to know a plan of attack, and what things should worry them. Most parents, however, just roll their eyes at me and ask, "How much longer?"

A long time, my friends. A very, very long time.

Holiday photos!

2010-01-10T14:56:00.001-08:00

Today, being my birthday, is the official end to the Curran Family Holidays. So far, 40 has been fantastic and I am so thankful for all that I have been blessed with in my life.

Here are some photos to share with you of our holiday season. Enjoy!

In the beginning of December, we took some time to help Aunt Nicki with her Christmas lights. Here is a photo of her dog Copper looking out anxiously as Brett and Jack decorated her house.

Next, we went to Grandma and Grandpa Currans to help decorate their Christmas tree. Here is Jenelle with some special one on one time with Grandpa and Grandma.

In the middle of the month, we celebrated an "early" Christmas with my parents. Here are Nana and Poppa George with Jenelle.

Here is Jenelle looking very cute at the White Elephant Christmas Gift party we have every year with family. My parents participated this year for the first time, and we think it will be a regular thing!

After the White Elephant Party, we took some time to take Nana and Poppa out to see Christmas lights. Here is Poppa George checking out Santa's saxophone.

On Christmas Eve, we celebrated mass at Holy Family Cathedral Church where Jack goes to school. Like I mentioned previously, Jenelle thrilled our fellow parishioners by walking to the altar for communion. It was a beautiful evening.

And after mass and dinner with Brett's Brother Brad and his family, we had our usual "Christmas Jammie" photos. I sure do hope the kids don't grow out of this tradition soon. Here they are in their new Christmas Jammies.

Jack, Jenelle and Daddy

Daddy, Mommy & Jenelle

Jack, Mommy & Jenelle

Kids already ready for bed and wanting to sleep under the tree.

In the evening on Christmas, we celebrated Christmas dinner at the Curran house. Here I am with Jenelle. I am wearing her Angels bow she got as a gift from the Steinkers.

And onto the New Year and Jack's birthday. This year, Aunt Nicki, Jenelle and I took a trip to Pasadena to view the floats. They were beautiful, but it was crowded and not wheelchair friendly. Definitely something to do once in your life, but we may not return again - or at least not with Jenelle.
The Anaheim Angels Float.

The Crowds

Nicki & Jenelle on the shuttle bus. Jenelle sitting like a big girl.

The next day we had a small football party for Jack's birthday. Here is is with his friends.

Here is our new 9 year old.

Last night, with the help of some wonderful friends, Brett threw a party for my 40th birthday.

It was a blast, and we all had a fantastic time - we were up until 2:30 a.m.

We caused so much trouble, a shirtless police officer had to break up the fun.

Oh well, you only turn 40 once, right?

We hope you had just as much fun during your holidays, and in the New Year.

Happy New Year!

2010-01-04T20:04:00.001-08:00

A new year and a new promise of good things to come! Jenelle had a wonderful winter break, but as usual started to get a little whiny after Christmas as her schedule was disrupted. Just when it started to wear on us, everyone went back to school! ;)

While on break, and with more opportunity to see Jenelle during the day, I decided to try to teach her to swallow pills. Guess what ... it worked! Jenelle is now taking all of her medications by mouth! Her seizure medication is liquid now, and she has adjusted well to the new texture and dose. She sucks it right out of the syringe without missing a drop. Her behavior medication comes in a very small oval pill. I put them on a spoon, then follow them with her sippy bear cup. She swallows them down and shows no sign of having a problem with it. If this continues, we could be closer to our goal of getting rid of the g-tube this summer!

Jenelle got a lot of musical toys from Santa and seemed a bit overwhelmed in the few days that followed Christmas. She has a couple new favorites now, but also prefers some old ones. It is just so remarkable to see how well she is doing. I smile every day just knowing she is in my life.

As for me, I started back on my chemo meds shortly after Christmas, and after my neutrophils returned to normal. I just finished a 15 day antibiotic, and I think that helped get me through the holiday without serious illness. I am due for another follow up, but am still waiting to hear from UCLA on the date.

Brett and Jack are just great. Jack turned 9 on New Year's Day and we had a small flag football party for him. I'm not sure who had more fun, the kids or the Dads. Brett is gearing up for another year of Little League and is currently at a Coaches' meeting. He seems to be happier these days and we both can sense the feeling of a fresh start in the new year. We also feel this year will bring many wonderful things for all of us.

On a final note, as some of you know, I will be hitting the "Big 40" this weekend. Instead of an age most people dread, I look forward to celebrating this year and many more birthdays to come. In honor of my birthday and my one year in remission, I am asking friends and family to consider a blood donation during the month of January in my honor. Please let me know if you do this so I can be sure to thank you!

Thank you for the thoughts and prayers. I'll post Christmas photos as soon as I get to it.

As always, I'll keep you posted!

Merry Christmas!

2009-12-24T22:55:00.000-08:00

I sat in church tonight and said many prayers. What a year it has been, and even though we've been through hell, I can't help but be thankful.

Thankful for humility - as I lost my hair, and scarred my body with rashes and needle pokes, and as some days I struggled just to have the strength to get out of bed.

Thankful for pain - because without feeling something, the experience wouldn't be real.

Thankful for time - the added time I spent with Brett, Jack and Jenelle. The days in the hospital with my Mom, and best friend Erin. The time to realize the important things in life.

Thankful for the difficulty - because if it hadn't been difficult, I wouldn't have learned as much from it.

Thankful for health and happiness - the new look on life, and the new ways in which I appreciate my body.

In church tonight at Christmas Eve mass. We sat in one of the last rows as a family. As the church sang Silent Night, it was our turn for Holy Communion. And together, as a family, we walked to the altar. Jenelle walked to the alter - holding Brett's hand and my hand. And as I sang, I got a little emotional. We've struggled so much, and yet here we are - healthy and thankful, walking with our amazing little girl to share in his love.

Merry Christmas. Thank you all for the love and support this past year.

ONE YEAR~

2009-12-22T09:53:00.001-08:00

Today is my official anniversary of being cancer free! ONE YEAR!

KCA!

Hair... one year later

2009-12-17T00:03:00.000-08:00

One year ago today, I looked like this...

And today, I look like this!

KCA!

Neutrophil watch

2009-12-12T10:49:00.000-08:00

I wasn't going to mention anything, because I assumed it would return to normal by now. Apparently, my neutrophils took a huge dive shortly after Thanksgiving when I caught that cold virus from Jenelle. The anti-biotic worked well, and I've been feeling fine with no cold symptoms, however when my labs were drawn at my last appointment at UCLA (on Dec. 2) my neutrophils had dropped to 700. Apparently the virus, along with chemo meds took a real shot to my immune system.

I had a message on my answering machine last Friday from the oncologist instructing me to stop all chemo meds. I called them back and actually got the nurse on the line. I was actually getting dressed to head out the door to go to Disneyland that night to enjoy the Christmas lights. When she told me my neutrophils were 700, I asked her if it was OK to go to Disneyland and she said absolutely not! She told me to be careful and to avoid sickies, but 700 had me concerned as anything below 500 and I'd be back in the hospital. Never mind that I had taken Jenelle to the Pediatrician the day before, or that I had just come home from my firm's Holiday party.

I had my blood re-drawn on Wednesday this past week and have been waiting for the good news. I spoke to the doctor yesterday, and my neutrophils are still low at 1,200. But they are headed in the right direction! They are going to keep me off chemo another week until it returns to normal. I can still go to work, but need to be extra cautious and avoid schools and sick people. I have to have my blood re-drawn this coming Wednesday.

Always better to be safe, and I can't imagine we've had a lapse in washing our hands this time of year. All I know, is that I am much happier and healthier than I am a year ago, and that keeps a smile on my face. No need for a neutrophil dance, but if you could send a positive thought that they keep increasing, that would be wonderful.

I'll keep you posted - and keep smiling! ;)

A new lease on life

2009-12-11T10:49:00.000-08:00

I can't help it, but I smile a lot more these days. I smile to myself in the car. I smile at people in the grocery store. I smile on my way to the printer at work. I smiled at 10 homeless people sitting outside the County Recorder's office this morning. I even offered a cheerful "good morning" to one man who actually gave me a smile in return. I'm smiling as I type this right now!

It is said that people who survive a life changing experience such as cancer often experience what they call a new lease on life. While the optimist in me wants me to think my whole cancer thing wasn't really that big a deal, I do realize it was. And that I came very close to dying.

So without fully embracing it, I have noticed subtle changes in myself for the better. Like smiling, and laughing, and striking up conversations with strangers. I find myself being more patient and not so hung up on the little things. At work I feel much more organized. I'm even happy to be at work and absolutely love what I do. It's a fresh start. A new lease with life.

As a survivor, you want to teach this to others, and share this happiness with the world. But sometimes there are people who simply can't change. I wouldn't wish for anyone to have to experience cancer, but for those who survive, there are silver linings and hidden gifts. And for even the most positive people, like myself, there are always new lessons to learn about happiness.

Try to find a new lease on life for yourself, without having to experience cancer. Try smiling more - it helps. Always be thankful for what we have in this world, because it is so very special.

Another follow up at UCLA

2009-12-03T22:34:00.000-08:00

On Wednesday I drove up to UCLA for another follow up with my oncologist. Things are great and I'm still cancer free! Over Thanksgiving, Brett, Jenelle and I came down with a cold. Jenelle started first with a clear runny nose, then I started to have it as well. My cold started to look like a sinus infection by Sunday, so my oncologist placed me on an anti-biotic. It worked well and I am doing fine.

My doctor still wants to keep me part time, but was OK with my increasing my work hours a bit. I've been able to work four, 7 hour days a week with Fridays off. When I asked about full time, the doctor reminded me that I was on an anti-biotic for a cold. Clearly, even though my mind is ready to do more, my body says to keep it slow.

As you can imagine, the cold has not been pleasant for a child like Jenelle, especially when she can't blow her nose. In the last day, the runny nose got worse and I took her in this morning to see Dr. Patel. Yesterday I insisted to the nurse Jenelle only had a sinus infection and that all she needed was a Z-pak. The nurse insisted the doctor needed to see her and it goes to show me, I'm no nurse; Jenelle has a sinus infection and an ear infection! Poor thing. She is now on a more powerful antibiotic and cough syrup. Hopefully she'll be back to her happy self this weekend.

Thanksgiving was thankfully uneventful this year and we really enjoyed sharing our desserts first the night before. After my appointment at UCLA on Wednesday, I walked over to the hospital and went up to the 6th floor oncology unit where I spent most of December last year. I spoke to a nurse at the nurse's station and dropped off a Christmas card/thank you note. She didn't remember me at first because last year I had "blond" hair, but said the best part of her job was seeing patients like me return to say thank you.

I peeked into my old room, which was empty, and reflected on how different things are this year. What a blessing to have a new lease on life. Thank you all again for your prayers and support. Things are so much better this time, this year.

I have a confession...

2009-11-22T20:36:00.000-08:00

(I wrote this 5 years ago for my Aunt Onie)

I have a confession. I'm 35, 36, 37, ~~38,~~ 39 years old, and I've never cooked a turkey. It looks like I'm not going to start this year either. I was never really the one to get up early on Thanksgiving morning and help my Mom with the bird - that was my sister, who now cooks a bird for her family. Then again, I sometimes feel like I'm missing out on something special.

The older I get, the more I feel I've become more like my favorite Aunt Onie. She is an amazing woman, but to my knowledge, has never cooked turkey on Thanksgiving. At least not for me. Aunt Onie and her family always came to our house for Thanksgiving and always made things fun. Her contribution was to buy the turkey (for my Mom to cook), bring the olives, a chocolate khaluah cake, and the Jack Daniels. Thanksgiving dinner was always early afternoon and always planned around football.

One Thanksgiving when I was about ten, my sister asked my Mom (in front of my Aunt) why we didn't go to my Aunt's house for Thanksgiving. I chimed in loudly and said, "Because everyone knows Aunt Onie can't cook!" Little did I know what a jab to her pride that was, being from the South and all! That year, we had Christmas dinner at Aunt Onie's house where she made an amazing roast and put out any ideas in my head that she couldn't cook. My sister and I decided it was easier to have everyone at our house (so we could play with our toys) and that was the last time we ever had a holiday at Aunt Onie's. Even now when my Aunt Onie sends me a card, she always writes beneath her signature, "and everyone knows I can't cook!"

So, while fearing that I've become a failure in life for never having the honor of cooking the bird, in my infinite wisdom I realized that I am now my Aunt Onie. I'm somewhat proud of this distinction because she is someone I admire so much. She taught me love, loyalty (she is to this day a die hard Rams fan, much like I love my Angels) and how to be a working woman in a man's world. I recently asked her if she was still a Rams fan, and she replied, "I'm still breathing aren't I?"

The most important lesson I think she may have inadvertently taught me is that it is not important to be the one to cook a turkey on Thanksgiving. We can add to the day with the dishes we bring, the spirits we share and the knowledge that we could make the damn meal if we really had to! And the ultimate secret that no one brags about is that when you aren't the cook, you can enjoy the day and still go home to a clean kitchen!

So, I am my Aunt Onie, and I can take pride in the fact that I have never cooked a turkey. Heaven help us all the day I do!

Happy Thanksgiving!

Anniversaries and Thanksgiving

2009-11-18T21:23:00.000-08:00

Type the word "Anniversary" into the search engine for this blog and you will find many posts from the last 6 years about Jenelle. The first anniversary of the day we found out she was having seizures was the hardest, as was the second anniversary that followed. During that time we had no idea what was going to happen with our girl, and we were living moment to moment. Over time, the anniversaries have gotten easier. In fact, it wasn't until I started typing this that I realized we just passed 6 years for Jenelle's seizure diagnosis.

Next week, another first anniversary is coming. Next Wednesday will be one year from the day of my cancer diagnosis. Not only is it a specific date, it is the day before Thanksgiving, so it reminds us of a difficult time for the entire family. Last Thanksgiving, Brett and I did not attend.

People have been warning me that this anniversary was going to be tough, that everything may hit me all at once. But in all honesty, I think it's going to be OK, because it's a different kind of anniversary. Instead of a reminder of something horrible, it's a celebration because I am still here. And just when I start to think that this is all about how I'm going to handle it, I realize there are others to consider.

Recently, Jack has been having some difficulty sleeping at night. A few nights ago, I went in to his bedroom to talk to him it about it. I asked if something was bothering him and at first he hemmed and hawed and said "No, I'm just really nervous about something." After quizzing him about school, sports and other things being the cause of his nervousness, I finally said, "Jack, Thanksgiving is coming next week and we'll have some time off to be together without school and stuff. It will be fun, don't worry!" And Jack responded, "Well Mommy, that's what makes me nervous. Last year you weren't there for Thanksgiving. Are you sure you're going to be there this year?" "Absolutely" I promised.

I now realize, I'm not the only one going through this cancer thing. While I may always be positive and optimistic, not everyone else feels that way and it may be tougher for someone else. So as a celebration of my diagnosis anniversary, we're going to eat our "desserts first" the night before with special friends. Because life is too short to skip dessert because you stuffed yourself with turkey on Thanksgiving.

Happy Thanksgiving to you all. Thank you once again for your support and for the many prayers for the Curran family this past year. We couldn't have survived without you.

Photos to Share & Updates

2009-11-09T18:22:00.000-08:00

Lots of you have been asking and wondering why I haven't updated recently. Well, life is getting busy for us in a good way. I have more energy each day, and the kids are as busy as a 7 and 8 year old can be. Things have been great. Busy, but great!

Jenelle is doing well since getting staples in her head for her birthday. We had them removed last Monday and had a delayed cry, but did well. The cut healed nicely and did not get infected. Jenelle continues to amaze us with eating and walking. It seems she gets stronger each day. Two weeks ago, Jenelle's teacher called me to inform me that Jenelle "purposefully" used her "Bathroom Switch". As you may recall, Jenelle's teacher has installed a switch button that when activated by touch says the word "bathroom." To help instill the potty training, Jenelle's teacher has Jenelle press the button each time they take her to the potty. A few weeks ago, Jenelle was sitting in circle time. She got up out of her chair, walked over to the button, pressed it, then went to her teacher and put her hand on her shoulder. The teacher then took Jenelle to the bathroom across the hall, where Jenelle went potty on the toilet! Exactly what we've been hoping she'd do! Now we need to get a potty button at home!

As for me, I was at UCLA last week for another follow up. After decreasing one of my chemo meds, my blood work numbers have been great and my immune system is stronger. I started my round of ATRA (vitamin A) and will be taking a 15 day course. This is the one I have to take every three months. The doctor still wants to keep me on a part time work schedule. She is more concerned with the flu that is going around, and feels I will be part time until at least the end of December. As for work, I am really enjoying it and getting back into a routine. Slowly I've been able to work longer days and really feel I'm not pushing myself. I think my doctor's estimate is right, and I should be back to full time at the end of the year. Oh yes, and I'm still cancer free! ;)

Now for the photos... As I told you, we've been busy! Enjoy!

Here is our new 7 year old with a small cake on her actual birthday (a Thursday this year.) As we sang to her, she smiled!

Here is Jenelle at the small party we had with family. Grandma was holding her hands so she wouldn't grab the candles.

Jenelle enjoying some special time with Poppa George as we passed around the cake. Poppa George and Nana drove down from Visalia for her party.

On October 23, Jack and I waited in line for 3 hours at Barnes and Noble in Santa Ana to meet Jeff Kinney, author of the "Diary of a Wimpy Kid" books. Jack was so excited, and really loves the books. We are excited and thankful that these books have sparked a love of reading for him.

Jenelle was Tinkerbell for Halloween this year. As Jack ran door to door with friends, Grandma and I took Jenelle trick or treating. Our next door neighbor didn't recognize with with my new hair. Jenelle walked well and did half the street without her wheelchair. The neighbors were excited to see her.

Here is our Tink cuddling with Aunt Nicki.

And this is the only photo I got of Jack on Halloween. He was a man eating shark. Because he used his sister's shoes as a prop, he told his classmates the shark was eating his sister!

Football season has come to an end and the football banquet was last Thursday. Jack and his team had an awesome year and he really improved.

Last Saturday, Jenelle and her Challenger Baseball Friends from Tustin Eastern Little League got to participate in the 4th Annual Challenger Classic at Angels Stadium Grandma came along to help me. Here we are on the field with Jenelle!

Here I am enjoying the Visitor's dug out with friends Barbara Kibby and her son David Kibby. Barbara is a die hard Yankees fan (from New York) so she was basking in the "Yankees" dug out as she liked to call it.

Here is our team posing for our team photo. We had some pretty special celebrities join us including Fox Sports Broadcaster and former Angels player Rex Hudler (bottom left) and former Angels player Bobby Gritch (last row on the far right.)

And finally... a special photo for me. All season, Brett and I contemplated trying to take my photo next to this MLB "Stand Up To Cancer" sign (which is right next to the left field foul pole), but we never got around to remembering to do it when we went to a game. Finally, I got the photo - thanks Steve Polley!

So, as you can see... we've been busy! ;)

Thanks for the continued thoughts and prayers. We'll keep you posted.

Talk About It! NEAM 2009

2009-11-01T11:25:00.000-08:00

November is National Epilepsy Awareness Month!
Purple is the color for Epilepsy.

According to most recent estimates, seizures and epilepsy will develop in 200,000 otherwise healthy Americans of all ages this year.

In 1995, the last year for which complete data are available, 2.3 million Americans had been diagnosed with epilepsy, had been taking anticonvulsant medication for at least five years, or had experienced an unprovoked seizure (a seizure not associated with an acute nervous system insult such as high fever, infection or head trauma).

Of these 2.3 million, 1.4 million were adults aged 15 to 64 years and 550,000 were citizens aged 65 and over.

Most poignant, 300,000 were children aged 14 years and younger-children in the prime of life and at a crucial stage in their educational and social development.

Almost 3 million Americans now have epilepsy.

~~~~~~~~~~~~~~~

Not a day goes by that I don't think about seizures. Is today the day Jenelle has a big seizure? Is today another day where she won't have a seizure? Will today be the day Jenelle's seizures change? Epilepsy is like the 5th member of our family. We live with it daily, but it doesn't control our lives or what we do with Jenelle.

Jenelle is who she is because of her seizures. Her seizures have left her mentally retarded and developmentally delayed. She has lost her chance at a normal life because of her seizures. To help Jenelle have a better life, we talk about her Epilepsy as much as we can, so people can understand why she is the way she is. We try to help parents going through the same thing. We advocate for a better life for Jenelle.

Talk About It! is a new organization spearheaded by Actor Greg Grunberg who is the parent of a child with Epilepsy. Greg has organized all of his Hollywood friends to help spread the word about Epilepsy. I couldn't say it better than the website, so please visit Talk About It.Org for more information about Epilepsy.

Wear purple, donate to your local Epilepsy group and most important... TALK ABOUT IT!

Every moment lost to seizures is a moment lost in brain development. Help us fight this monster from stealing precious moments in development from our little girl.

THANK YOU!

Happy 7th Birthday Jenelle!

2009-10-22T03:00:00.000-07:00

As I was uploading the video below to share for Jenelle's Birthday today, I heard a huge "thud" in the hallway. Apparently, Jenelle fell into the door in the hall, and that is not unusual for Jenelle. A few minutes later, Jenelle sat in front of Brett (who was sitting on the couch) and all of a sudden, he noticed blood running down her back. Jenelle had split the back of her head open.

Given that Brett cannot lift her right now because of his shoulder surgery, I took her to the ER, where Grandma met us to help me. It was not a good night for the ER. We signed in at 9:30, and didn't see a doctor until 1:00 a.m. I joked with the nurses that the wait was so long, Jenelle arrived when she was 6 years old, and left when she was 7!

After a lot of Lidocain, the doctor put in 6 staples. Jenelle giggled through the process. In all, she never cried or showed that she was in any pain. This child is truly remarkable.

I'm sure Jenelle didn't really want staples for her birthday, but so far that is her first gift. In honor of this special day, I wanted to share some recent video of Jenelle giggling. And just for fun, I have a photo to document her ER experience this evening. As you can see, she is all smiles. Thank you for all your thoughts and prayers.

Happy Birthday Boo - We love you!

Busy days and a Follow Up

2009-10-19T21:18:00.000-07:00

Life has been extremely busy lately. Illness, sports for Jack, surgery for Brett, and a trip to UCLA for Jenelle... not to mention increasing hours at work for me.

Last Tuesday, Brett had routine shoulder surgery for a rotator cuff tear. Originally, the doctor thought his recovery could be 6 months or longer. As it turns out, the tear was not as bad as he originally thought. Brett's recovery looks to be 4 to 6 weeks now instead of months. Finally, some good news health wise. Brett did well with the surgery, other than having an adverse affect to anesthesia. He's having some pain, but is doing well.

I had my follow up blood draw last Monday. It appears decreasing the Methotrexate did the job and my neutrophils are back up to a better level. I've been doing well and am trying to fit in more hours in my work day I'm not needing naps as much, but still get tired. Trying not to "over do" gets more difficult when life slowly gets back to normal. Taking care of the kids and working is pretty much a full time job.

On Sunday, the family participated in the Children's Hospital of Orange County Walk in the Park at Disneyland. We were able to get there on time (at the crack of dawn at 6:30 a.m.) and only walked half the walk so as not to tire me out. After the walk we ate at IHOP, then went home where I took a 4 hour nap. I must have needed it.

And today, I drove Jenelle to UCLA by myself for a follow up with Dr. Shields. Jenelle's appointment was at 1:00 and we had tickets to today's Angels game against the Yankees at 1:15. Last Friday, I called to try to reschedule, but was told that Dr. Shields was going into "semi-retirement" and we had the only appointment left on his last day. Not wanting to miss seeing Dr. Shields, I told Brett to take a friend to the game and we didn't reschedule. When I told Dr. Shields that he was better than tickets to the Angels ALCS game, he told me he would have cancelled his appointments and gone with me instead! In all these years that we've been seeing Dr. Shields, I never knew he was an Angels fan! No wonder we love him so much!

Jenelle had a great follow up. Dr. Shields agreed it was a good idea to try to get Jenelle onto liquid meds so we could eventually get rid of the g-tube. As it turns out, his "semi-retirement" means that he will be taking the rest of the year off, and returning next February to a part time schedule. He would like to stay with Jenelle as long as possible, and that is just fine with us. As always, he was very proud and impressed with all that Jenelle is doing.

Traffic up to UCLA was really light. We got there early, so Jenelle and I had a slice of pizza (her new favorite meal) in the hospital cafeteria. As we walked out, we ran into my oncologist. She was confused when she saw me because my next follow up isn't for another two weeks. Once I explained that Jenelle was seeing her doctor, she was very happy to meet Jenelle. What a wonderful place this has been for our family. We have so much to be thankful for at UCLA.

Thank you for the donations to the CHOC walk, and for the continued thoughts and prayers. I'll keep you posted.

Seven

2009-10-08T21:38:00.000-07:00

Recently, I was playing around with the settings on this blog, and decided to change the Archives on the right side to a "hierarchy" setting (a setting that shows the years and numbers of posts instead of the scroll down menu I was using.) I thought to myself that showing the years of entries that I've typed into this website would make me look like a more accomplished writer. Like a more reputable blogger since I've been doing it for a few years. Then, I counted the years listed on the Archives section. Seven years. And it hit me. Our little girl is going to be seven years old.

As we began this journey with Jenelle when she was just six months old it was hard to imagine age seven. Instead of seeing all the entries I've made here as a testimony to my own personal writing skills, I realized that we are looking at the very seconds, minutes, days, months and years of Jenelle's life. In seven years, we have had heartache, denial, acceptance, tears, happiness and triumph. Every letter, every comma, every word and every paragraph is a moment in her life.

Sharing her life on this blog, with all the positives and negatives, has been such a blessing. Writing has always been therapeutic for me, but knowing that Jenelle's story brings hope to others makes me feel like the heartache is worth it somehow. I hope you all know that sharing her with you helps me cope, and helps me survive.

I've always been an optimistic, glass half full type of person. You can't teach that kind of attitude, sometimes you just have to be born with it. But a positive attitude helps one survive raising a child with special needs. And instead of dreading the worst, we celebrate the best. Because you have to realize that Jenelle's life is a gift to us all. She is a miracle, and I couldn't be more proud.

Another visit to UCLA

2009-10-05T17:45:00.000-07:00

I had a follow up appointment today with my oncologist at UCLA. Jack did not have school today and decided to tag along for the ride. He wore his UCLA sweatshirt and was hoping to see quarterback Kevin Craft on campus. It sure has been fun spending time with him and I was glad he came with us, so he could see the place and meet the doctors who have helped me get better.

The visit was a good one, except that my neutrophils are very low and my white blood cell count is borderline low. Brett and I have been fighting a sinus cold that has been going around and he has had it worse than me. Last week Brett was in bed three days with a fever of 102, sore throat, stuffed sinuses and a cough. I had the sinus and cough, but no fever. The doctor thinks that my counts are low because of my chemo meds, so she wants to lower them and re-test my blood next week. Also, because of the low neutrophils and with me fighting off this sinus thing, they put me on anti-biotics.

Jenelle has been doing very well these days and is eating everything possible. It is like she finally understands that chewing will allow her to eat more interesting foods. Last week's menu included pizza, popcorn, ground beef, French toast and pancakes! She loves food! Jenelle has an appointment coming up in two weeks with Dr. Shields. We plan to talk to him then about switching to liquid seizure meds to see if she can tolerate swallowing them. If so, we may start considering removing her g-tube in June when we see her GI doctor. What a milestone that would be! Right now, we've only been using her g-tube for medicine because she is eating well and drinking most of her formula from a straw.

Jenelle had her annual IEP last week. She accomplished 8 out of 15 goals from her last IEP! she continues to improve in every area and we couldn't be more proud of her and the team of teachers that work with her every day. We love the results we are seeing.

That is all for now. I will keep you posted on my lab work next week. Thank you for the continued prayers.

New Normal, New Habits

2009-09-22T19:07:00.001-07:00

With Jenelle, we've always been adjusting to our "new normal" as we like to call it. Whenever Jenelle meets a new milestone, or has a set back, it changes our normal routine. And thus, we experience what we call a "new normal. Lately she has been really thriving, and our "new normal" gets easier and easier.

During my first week back to work, the new HR manager at my firm told me to start making "new habits" for myself. "New habits" to be healthier. I've kept those words in mind each day as I slowly adjust to the new schedule. My new habits include drinking more water, eating healthier, and listening to my body when it tells me it needs a nap. I can't help but compare the phrases "new normal" to "new habits." In many ways, they sound similar, but are very different. "New habits" can be made for yourself, while a "new normal" is a change you adjust to. I think the "new habits" are easier.

Like I said, Jenelle is really thriving, especially in her eating. She is really chewing more, and able to tolerate more foods. Her menu now includes pasta, beans and rice, chopped chicken or turkey and pizza! All of these items have to be cut into small pieces of course, but she is chewing and handling it very well. Instead of pureeing lots of veggies for her, I now give her mostly what we are having mixed up in a bowl. This weekend she also grabbed my fork and fed herself. She sure loves her food!

Jenelle is also adjusting real well to first grade. She enjoys using the adaptive switches to play computer games at school, and is being taught to use a switch that activates a voice that says "bathroom" whenever she has to go! Her progress has been amazing, and each day we are so very proud of her.

Jack is doing well in 3rd grade, and is very busy with football and Fall baseball. I hope we don't burn him out, but he sure does love his sports. If there can be one blessing to come from my having cancer, it was the opportunity I had to spend the summer with Jack at home while I was on disability. There are so many times that his needs are thrust to the back burner because of Jenelle. I think he really enjoyed our special outings together. He has matured so much this year, and is such a joy. I am so thankful.

Finally, some photos to share. The first is of Jack on his first day back to school. I think he's getting too old for photos at the desk.

This adorable photo was taken on Brett's birthday. The timing of Jenelle's smile was just perfect.

Here we have Jenelle all ready for her big brother's football game! It is really cool that Jack was #1 last year because now it is the perfect jersey for Jenelle to wear to the games.

Here is a photo of Jack as he fell asleep in the living room clutching his UCLA football. He plays till he drops!

And finally, a new hair update! A few weeks ago I went to my stylist, Chaz, to cut off the fuzz and add some color. I'm learning to style the curl and like the lighter color. I just hope it grows faster in time for my driver's license photo in January!

That's all for now. Thank you for the continued prayers! I'll keep you posted!

Slow and easy wins the race!

2009-09-14T19:08:00.000-07:00

I started back to work last Wednesday and had 12, 477 emails to sort through on my first day. By Friday, I had that amount down to 298. I am working a part time schedule of 4, 6 hour days a week with Tuesdays off. I take my chemo pills on Monday night and find that I am usually very groggy and tired on Tuesday. So far, the schedule works well. I get in early and get home in time to get a quick nap in before getting the kids.

It has been wonderful to get back to something normal. I am listening to my doctor and taking it very slow. I was tempted to take home some work last week and decided to force myself to rest. As they say, "slow and easy wins the race" and thankfully I have an employer who understands that concept.

The kids are both back to school and we are all falling back into the old familiar schedule. Brett's surgery that was scheduled for today has been postponed because his doctor has the flu. I think that is a blessing because I wasn't ready to start lifting Jenelle to much.

Thanks for the thoughts and prayers. I'll keep you posted.

Full Circle

2009-09-03T21:19:00.000-07:00

Brett and I took the old familiar drive up the 405 today for a follow up appointment with my oncologist. Prior to seeing her, I had to have a blood draw. Today for some reason my body and veins decided to be difficult, and it took 45 minutes and 4 pokes to find a good vein. My oncologist told me it was time for some arm exercises to help build up my veins.

While I was sitting in the phlebotomist chair, another doctor walked in with a woman about my age who was very upset. The doctor asked the phlebotomist to do a panel on her and led her to the chair beside me. She was with her Mom it seemed. Even with a partition between us for privacy, I could hear her sobbing silently and her Mom telling her it was going to be OK and she was going to beat it. All this time while she was crying, I was getting poked.

A few minutes later, the nurse practitioner walked in to ask the woman for her insurance card. As the nurse walked away, she leaned over to me and whispered, "This woman just found out she has your exact diagnosis. Maybe you could talk to her?" I nodded and the phlebotomist continued to poke me. A feeling of relief fell over me. My biggest fear when I first saw this woman in tears was that her cancer had returned, and I worried that it could happen to me. It didn't dawn on me that this was new to her.

When the phlebotomist was finished with me, I stood up and peeked around the partition. I let the woman know we had the same diagnosis and that I was now cancer free. She was 41 years old and lived in Irvine with a 2 1/2 year old. She asked me my age and if I had kids. Her biggest concern was surviving the month long chemo induction in the hospital, and missing her daughter. I told her about the nice rooms and the wonderful nurses, and how UCLA had the best treatment in the country. I emphasized that our type of cancer was curable. I didn't tell her the bad things. She had long, pretty brown hair and was worried about losing it. I told her it took my hair 2 weeks to start falling out, and that eventually it would grow back.

She thanked me and I wished her luck as we left the room. As we walked down the hall, I told Brett that I didn't remember ever crying like that when I first got the news. He laughed and told me that I cried hysterically when I got the news. I guess I don't remember it that way. In fact, trying to remember everything that has happened these last 9 months is sometimes difficult for me. I don't remember much of the bad stuff. Part of me thinks that is because I'm such an optimistic person. Then I look down at my skin and see the scars from my rashes and blood draws and PICC lines, and the lost finger nails and toe nails. I run my hand through my short curly hair. These reminders will be with me for a while.

I don't know why God has given me so many challenges in my life. Just when I think I've adjusted to raising a special needs child like Jenelle, he gives me Leukemia. They say God never gives you more than you can handle. My response is that I wish he didn't think so highly of me.

My appointment went well today. My White Blood Cell count is a little below normal, but nothing like it was when I had cancer, or when I was getting IV Chemo. My doctor approved me to return to part time work. I plan to go back next Wednesday. My doctor explained that she really wanted to stress me taking it slow because fatigue can make me more susceptible to illness (especially with flu season right around the corner!) I called my boss a bit ago because I wanted her to hear it from me first and she was very excited and agreed 100% with my doctor's recommendation.

So I guess I've come full circle now. I am a cancer survivor, and I was able to pass on my personal experience to help another who is in the same place I was 9 months ago. I wouldn't want to be in her shoes. Been there, done that. I am so thankful to finally get my life back to normal. Whatever normal means for our special family.

Thanks again for the thoughts and prayers. I will be seeing my oncologist again in one month. And of course I'll keep you posted!

No piggy in our house!

2009-09-02T17:03:00.000-07:00

Finally this afternoon we got the results from Jenelle's test for Swine Flu and it was negative! Jenelle held her fever for most of the weekend and has been fever free since Monday evening. Thankfully that is one less thing to worry about - I have been healthy as well.

Brett's surgery is for a rotator tear in his right shoulder. It is an old baseball injury that has become worse over the years. Brett has been having more pain with it since coaching Jack and Jenelle's Little League the last three years so its a good time during the off season to get it fixed. His surgery has been postponed until September 15, and his recovery should take 6 weeks.

I see my oncologist for a follow up tomorrow and should know more about my numbers. Hopefully I'll get the OK to return to work! We're almost there!

Thanks again for the thoughts and prayers! I'll keep you posted.

Because we don't do things half way in this family...

2009-08-28T15:27:00.000-07:00

So, when I got Jenelle from daycare yesterday, her caregiver mentioned that she had been lethargic all day. I dismissed it thinking it was this heat, but took her temperature anyway - 100.8. I gave her some Motrin and she was happy. This morning, her temperature was 102. No other symptoms, just a fever. Thinking I didn't want things to get worse if it was an ear infection, I called her doctor to see if they could get her in. We saw the doctor this afternoon, and Jenelle is now being tested for H1N1 or more affectionately known as the Swine Flu. We will not have results until Monday or Tuesday.

With my starting chemo pill maintenance two weeks ago, you can imagine my concerns. I had labs drawn on Wednesday, but the results have not yet been faxed to my doctor. I spoke to my oncologist about Jenelle, and she was going to prescribe Tamiflu as a precaution - but like everything else in this world, I am allergic to Tamiflu (took it once and had a severe rash and some breathing problems.) So now we are just hoping Jenelle does not have a positive result, and that she hasn't passed it to me.

I have been doing really well with the pills - no reactions so far. I have some fatigue here and there, but it comes and goes. I am getting stronger every day and really feel I might be ready to get back to work! I see my doctor on Thursday and will know more.

Brett is having shoulder surgery on Tuesday the 8th. This is something he has needed to have done for some time, and should be a quick outpatient procedure. Fortunately, Jack is well and only faking illness so he can miss his first day of school this Monday. Where did summer go?

Please keep Jenelle in your prayers. As you can imagine, any illness for her is always scary as it can get out of hand very quickly. And of course, we want some stay well prayers for me as well. I am getting so close to getting back to normal, I can taste it. I wouldn't want this to slow it down!

Thanks again - I'll keep you posted.

Light the Night

2009-08-19T15:28:00.000-07:00

A very good friend of mine from many years working together is participating this weekend in the "Light the Night" fundraiser for the Leukemia & Lymphoma Society. Victoria Craig and her husband Darrell are going to be walking around Anaheim Stadium (lucky bums!) on Saturday for this event. Victoria is dedicating her walk to me.

The Leukemia & Lymphoma Society has been helpful to many families including mine. The funds raised help individuals with travel to doctor's appointments, prescription co-pay assistance, and of course research and support groups. I personally have found the on-line support group to be very helpful. And I know that without the research funds, there might not have been a cure for my cancer.

Please help this worthy cause and follow this link to donate and support Victoria's walk in my honor. Victoria's Donor Page

Thank you all so much!

And we begin... again...

2009-08-12T18:11:00.000-07:00

I started the chemo pills last night and am weaning off Predisone. Other than a slight headache today (which could be something else entirely) all is good so far! I am to have a blood draw to check my counts and my immune system on August 24, and am scheduled to see my oncologist on September 3. Keep your fingers crossed that all goes well!

Just waiting

2009-08-09T13:29:00.000-07:00

Well, we think my rash may have been caused by the phlebotomist. It mainly stayed in the crease of my elbow where they had drawn blood. I forgot to tell him that I was allergic to latex, so we're pretty sure that was the culprit. I've been on daily predisone, and the rash is almost all gone. I am to call UCLA on Monday for more instructions and it is possible I will be starting the chemo pills soon.

I have a lot of energy now but am just waiting to see how the new chemo affects me. If I handle it well, I should be back to work very soon. My boss insists I start on a Thursday to give myself a couple of days to catch up, and we all agree I should start part time at first. So life is slowly returning to normal.

Jenelle is doing really well in her new class. In just a few weeks I've already noticed a huge difference in her. She is more patient, and she has a new word - "ba ba". Getting closer to "Da Da" which would thrill Brett to no end. Her school is teaching her to control her tantrums and I've definitely noticed a difference. She is growing up for sure!

Thanks for the continued prayers! I'll keep you posted!

hang on a second...

2009-07-31T20:32:00.000-07:00

So, we're now on hold to start the chemo meds. On the morning of my appointment on Thursday, I woke with some itching on the inside of my arm. I mentioned it to the doctor, but we both thought it was subconscious since I didn't have any symptoms prior to this. Well, now I'm itching on the inside of both arms, and I have red bumps on the right arm. I spoke to the nurse practitioner just now, and she instructed me to increase the Predisone and hold off on the chemo meds until we could talk to the doctor on Monday. Obviously if it gets worse, I am to call her back.

I'll continue to keep you posted. Hopefully this is a minor delay. KCA

And we begin...

2009-07-31T10:56:00.000-07:00

I had another follow up yesterday at UCLA with my oncologist. Things are going well with the rash, so she has started me on my chemo maintenance drugs. The course is so confusing, I'm going to need one of those pill boxes my parents use! One pill one day, two the next, one pill the next day and one every ten days. Oh my! I'm confused already! I will be on these drugs for the next two years. I'll have my labs done in two weeks, and she wants to see how my blood counts do with these meds. If things stay the course and I remain stable, she may approve me to go back to work soon! Things are definitely on the right track!

In other good news, she gave me her blessing to drive again. Brett is finally free of being my personal chauffeur. To celebrate, I drove to Starbucks this morning and got my car washed. I'm so excited to say that I'm on my second tank of gas for the year! ;)

Brett and I will be celebrating 11 years of marriage tomorrow. I can't help be think of all the trials we've been through (sickness and in health, but mostly sickness). He is amazing, and I'm so thankful for all he has done during this time.

That is all - I'll keep you posted! KCA

School and Summer Fun

2009-07-25T11:11:00.000-07:00

Anyone who has been around Jenelle in person knows that she gravitates to anyone with food. She may stumble and walk slow when we try to change her diaper, but if it's meal time she can walk to the table with grace and ease. So imagine our laugh when this photo came home from school last week.

At the start of the extended school year in July, Jenelle was promoted to 1st Grade, and thus has been moved to a new classroom with new teachers. She is still with the Orange County Department of Education program and we couldn't be more pleased with her new teachers and the overall setting of her classroom. There are more age appropriate things for Jenelle, and as her teacher says, "it is time for her to grow up a little!" I can tell you, many in our family have that same expression on our face when Jenelle sneaks up on you when you have food! That is why we had such a good laugh. The teachers are still getting to know Jenelle and her many unique characteristics. Jenelle is doing well with the change in environment, and we think it will be very good for her.

The county's program has undergone a lot of changes due to budget, and a lot of kids are now missing out on the expertise of the county teachers. It is very sad to see this happen. There is a lot more I could say but I will bite my tongue for now. ;)

And of course, Jack is not having any fun at all this summer. Here is photographic evidence as Aunt Nicki dragged him to Disneyland last night.

See, absolute torture! ;)

Follow Up at UCLA

2009-07-13T20:35:00.000-07:00

We made it safely to UCLA and back today without any celebrity deaths! Thank Goodness!

I had a follow up with my oncologist today and things are going well. She finally gave me a proper weaning schedule for the Predisone, but it looks like I will be on it at least another month. I will be glad to be done with it. She does believe it is helping the rash, so I need to stay on it.

Speaking of the rash, it is resolving, and is not as painful, "flaky" or raw as it once was. I am however spotted where the rash was. The bad news from today is that my doctor said it could take months for the spots to go away, and I could end up with some scarring. The funny part was that she warned me not to use any "skin bleaching" products until she approved. I had not heard of such thing, so when both Brett and I said "bleaching?" she said, "you know, like Michael Jackson!" Which gave us all a chuckle remembering our last visit. (Oh yeah, I was correct and a paparazzi pulled the fire alarm -what a mess!) I'm also still pretty fatigued, and she said part of that was the Predisone, and part of it the chemo recovery.

The best news is that my blood levels were great and I am still cancer free! I see her again in two weeks and at that time she thinks we may be able to start chemo pill maintenance with the ATRA (Vitamin A).

I did not intentionally leave Brett out of the last update. Blame it on chemo brain. Brett is doing well. Brett is starting to return to work more during the week as he feels more comfortable leaving me alone at home. I think that is a fantastic sign that we are finally starting to get back to normal. For all that we've been through, it has absolutely been rough on Brett. I feel bad because there are many people taking care of me, but not many to take care of him. We are looking into some local cancer support groups, and we are surviving day by day. Brett has been my absolute hero, and I know we will survive.

Thank you all for the thoughts and prayers. I'll keep you posted! KCA!

More Hair

2009-07-10T12:10:00.000-07:00

I was waiting to update on Monday, but realized it had been a while since my last update. Things are going well for all of us and we had a wonderful 4th of July. I rested most of the day and we spent the evening at a friend's home enjoying food and fireworks. The good news from the 4th is that Jenelle enjoyed the fireworks and didn't have seizures - Yay!

Jenelle has taken her door knob turning talent to daycare and has "snuck out" the front door at daycare twice now! Thank goodness they have a gate! The second time she did it, we're told the sprinklers were on, so Jenelle got her own little bath in the process. She is quick!

Jack is having a great summer and really enjoys having me home. He has mostly been doing baseball camp during the day and playing with lots of friends in the afternoons. He is very busy, but loves to tell me goodbye in the morning before he heads out.

I am doing well, but am still shedding a lot of dead skin. A lot of the pain is gone but I'm still really tired and weak. The doctor still has me on a very high dose of Predisone, and that just makes me shaky and tired. I can't wait to see her next week to hopefully start coming off this drug!

And finally, I took a new photo to document my hair growth. It is really coming in now, and is soft, full and curly. I have no idea what to do with it so I mostly wear baseball hats all the time. I think I need a trip to my stylist soon. Here is a photo for you to enjoy - notice there is no gray! ;)

And just because he's so cute, here is Jack at an Angels game enjoying summer!

Thanks for the continued prayers. KCA!

More Baby Proofing Needed...

2009-07-02T20:07:00.000-07:00

Well, Jenelle gave us a little scare the other night when she locked herself into the bathroom. Until then, we had been getting by with closing doors to keep Jenelle out of certain places. The beauty of course in that is that Jenelle has learned to "turn" door knobs (and round ones at that!) Brett had to use a screwdriver to take the door knob off the door to get her out. A great milestone for sure, but now we definitely need to up the pace on the baby proofing.

Also, I wanted to share two beautiful candid photos taken of Jenelle and me by our cousin in law, Alain Chapuis at Easter this year. Thank you Alain, these photos are just priceless.

We hope you all have a wonderful 4th of July weekend. We are going to take it nice and easy and stay close to home. Enjoy!

Jenelle & Mommy Update

2009-06-29T22:45:00.000-07:00

Jenelle had an appointment this morning with her G.I. doctor to check her g-tube and nutrition needs. Jenelle is doing very well weighing in at 50 pounds, 48 inches tall and the 50th percentile for both height and weight for her age. Dr. Idries was very pleased with Jenelle's growth and accomplishments (yet another doctor who hasn't seen her walk - that happens when you only see that doctor once a year.) She is cutting her back to two cans of formula a day since it appears that Jenelle eats so well now on her own. We will keep giving her the formula to make sure that Jenelle gets adequate vitamins and minerals and things she needs but might be missing from the diet of mostly pured veggies. We will see Dr. Idries again in another year.

Also, last Wednesday, Jenelle's school had their annual Awards and Promotions ceremony. I made it to the ceremony and got to watch Jenelle win an award for "Improving her Ability To Use The Bathroom Consistently and Chew Harder Foods." As always, the ceremony was sweet and emotional.

And, it seems I've been paying the price for over doing it these days. After the awards ceremony on Wednesday, I had enough energy to want to go to Tustin's concert in the park with some friends to listen to the music and celebrate a friend's birthday. That made for a full day, and then the next day of course we were at UCLA for my follow up, and well, you have the update on that. I'm still a bit sore in my knees from where I took a spill. On Friday, Brett and I decided to see a movie. After the movie, I was done. It was like I'd hit a wall. The weekend and most of today have been spent going from my bed to the couch and back again. I'm tired of being tired and can't wait to have some energy again.

Jenelle is doing well and I'm recovering still very slowly. Thank you for continued thoughts and prayers. I'll keep you posted!

A very interesting follow up at UCLA today...

2009-06-25T20:07:00.000-07:00

PLEASE READ: If you have made your way to this website via "Michael Jackson Death Hoax" dot com, please know that the administrator at that website has used this post to support incorrect information. The fire alarm that is discussed below was for the 200 Medical Center Building in the Peter Morton Center. This building is next door to the Ronald Reagan UCLA Medical Center Hospital where Michael Jackson did in fact die on June 25, 2009. The hospital did not have a fire drill, nor was it ever evacuated during the time that the Jackson family was there. It was later determined that the fire alarm at the 200 building was pulled by a paparazzi to create a distraction so he/she could sneak into the hospital. I have tried to find a contact or an e-mail for the administrator at the Michael Jackson Death Hoax website but conveniently for him or her, one cannot be found. If the administrator reads this, please correct your post and remove your link to this website. If you don't, I will make a formal complaint to Wordpress about your site.

Today I had another follow up appointment with my oncologist at UCLA, and while there, Brett and I got caught in the middle of the Michael Jackson media frenzy regarding his death in the building next to the one we were in. What a sad loss at only age 50.

The day started routine, I arrived a little late for my 12:30 blood draw. Because the results take an hour, Brett and I walked into Westwood to Chili's for lunch. This was a good 3 block walk for me and I'm getting stronger. Apparently, while eating at Chili's, Michael Jackson, the King of Pop, was brought to UCLA Medical Center by ambulance in Cardiac Arrest around 1:00. As we walked back to my 1:30 appointment, Brett and I noticed a helicopter that was hovering the hospital and seemed out of of place since it wasn't landing. Once we got in and into our waiting room for my doctor, we jumped onto WiFi to read in the news what was going on. We couldn't believe we were right there. As we waited, we heard the news of Michael Jackson's death via Twitter. The helicopter sounds grew, and we were curious what was building outside. The nurses weren't really confirming anything, but it was obvious some were in the know.

After waiting almost two hours (my oncologist was fitting me in) we finally got to the exam with my doctor. My rash is healing, and the pain I am feeling and describing is my entire body growing a new layer of skin. She said two more weeks and I should be through the worst of it. She was very pleased with how I was healing, and my White Blood Cell counts, Hemoglobin and Platelets couldn't be more normal - I could donate platelets now if they'd let me! And then as we were about to get to some bigger questions, a fire alarm went off. We had to evacuate the building with the doctors and nurses and stand outside as the media frenzy was growing regarding Michael Jackson. I think a Paparazzi probably pulled the alarm as a distraction. Still, we had to wait for the fire truck and the all clear, within yards of the entrance to the hospital where Michael Jackson was.

In fact, after the little fire alarm, we found out that one of the nurses (the one who takes my vitals) was approached by a young black man as we were waiting for the all clear. He told her his name was Jermaine Jackson, Jr. and he needed help finding the entrance to the hospital, so she escorted him. She was just a few feet away, and we missed it! Once we got the "all clear", we went back in to finish my appointment. At that point, a lot of the nursing staff was confirming that Michael Jackson had indeed passed away. Not sure if we knew ahead of everyone else, but it was still shocking news to say the least. The good news about the rest of my appointment: I am still cancer free, and I no longer need to have blood draws at home! Yay!

Once our appointment was done, it was around 4:30, and Brett and I started to leave, hearing that streets had been closed and we may run into problems. When we got outside, we couldn't believe the change. Seven satellite TV trucks lined up and thousands of people with flowers, signs, etc. We decided that since we were thrust into the middle of it, we may as well get a couple of cell phone photos. It was amazing, it was almost like within an hour, thousands of people were there at the hospital. Here are the two photos I managed to take on my cell phone:

And of course, we had some more drama. As we tried to cross the street to take photos, I tripped over my flip flop and skinned up my arm and leg. It happened right in front of two paramedics and they did nothing. They must have thought I was some Michael Jackson fanatic. Brett was hoping to get interviewed so he could say, "Michael who?" He has such a sense of humor! We went back to oncology where they patched me up, and then we were finally on the way home.

We made it out of the parking the "back way" on Gayley very easily and hit some traffic on the way home. It was a long, strange day. But lots of good news amongst the sad news in Hollywood with Farrah and Michael. I hope they rest in peace.

My next appointment is in two weeks - I'll keep you posted! KCA!

What a long strange trip it's been...

2009-06-18T18:16:00.000-07:00

Kelly here. We had a follow up with my oncologist today. She really wants to watch this rash to make sure things don't get out of hand. I really don't remember a lot of what happened in the hospital, but my doctor said it was quite serious, and I'm very lucky.

As you know, I was admitted on May 22 for infected mouth sores. When I started to spike a fever of 104.8, I was very scared. Scared for my life. They threw a lot of meds at me, and it worked and the fever went away. A few days later I started to get a rash, which they assume was from one of the many drugs they had me on. And then I hit a fever again of 104.8. We found out that I'm very sensitive to drugs, and we now know I'm allergic to Latex. Brett and my Mom tell me there was a point when my sodium level was down, and my kidneys were not working well. My heart rate also dropped very low. I was hallucinating, and I really don't remember any of it, but my Mom says I didn't stop talking. At that point, I was moved into more of an ICU type room for a few days. My fever was gone for a good 4 days, but the rash (as you've seen in photos) was worse, and is very painful in my joints. I am using morphine every 4 hours for the pain.

The hospital decided with my fever gone, it might be best to rest at home with the rash, so as not to risk any infection I could get at the hospital. My biggest motivator in agreeing to go home was that they would stop poking me for blood draws. Remember, I don't have a PICC line anymore, and they had to change my IV site every 5 days to avoid infection, and of course I was poked every morning for labs, cultures, etc.

I'm doing well at home. Still in a lot of pain, but resting and eating better.

Thank you all for the prayers. This last hospital was frightening to say the least, but at least now I know I will survive. I'll update again when I can. KCA!

Kelly is home..

2009-06-16T08:18:00.000-07:00

Kelly got home late last night and went straight to bed. She is still very tired. She is walking much better. The kids were very excited to see her. Jenelle saw her and had the giggles for 10 minutes. She was very excited to see mommy. Jack really enjoyed saying goodbye to mommy this morning. The smile on his face was priceless. He couldn't be happier. We have an appointment next week to see if the cancer is gone. We still have a couple more big steps. Thank you to everyone. You thoughts and prayers have been very helpful. KCA/KRA